NHS Digital Data Release Register - reformatted

NHS England (Quarry House)

Project 1 — NIC-107814-Z0J1Q

Opt outs honoured: N

Sensitive: Sensitive

When: 2017/12 — 2018/05.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Improving Access to Psychological Therapies Data Set
  • Mental Health Services Data Set
  • SUS data (Accident & Emergency, Admitted Patient Care & Outpatient)
  • Mental Health Minimum Data Set
  • Mental Health and Learning Disabilities Data Set
  • Local Provider Data - Emergency Care
  • SUS for Commissioners
  • Ambulance-Local Provider Flows

Objectives:

Objective for processing: Generic objectives applicable to all requested data sets The requested datasets are required to ensure that NHS England can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS England (NHSE) in the following responsibility areas: 1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities 2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities 3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively 4. To engage the Health Foundation to provide their analytical expertise to the Health Data Lab project 5. There is a requirement to link all datasets available on the tNR in order to fully understand patient pathways. This enables better planning of patients care to realise improvements and efficiencies. This will be possible through the creation of a consistent pseudonym applicable to all datasets. In summary, to better understand the relationship between physical and mental health, NHS England intend to link SUS, Mental Health (MHMDS, MHLDDS, MHSDS), IAPT and 111 pseudonymised record level data for commissioning purposes to ensure commissioners can understand full patient pathways for their patients and plan their care. This is an area where the evidence is currently relatively weak, for example NHS England cannot currently answer questions such as whether patients with MH issues are more likely to be admitted or readmitted to hospital, or whether they have longer stays, and therefore linking data is an important requirement. Objectives applicable to specific data sets Mental Health (MHSDS, MHLDDS, MHMDS): Despite previous initiatives such as the 2011 mental health strategy, challenges with system-wide implementation coupled with an increase in people using mental health services has led to inadequate provision and worsening outcomes in recent years, including a rise in the number of people taking their own lives. NHS England and the Department of Health published Future in Mind in 2015, which articulated a clear consensus about the way in which NHS England can make it easier for children and young people to access high quality mental health care when they need it. The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce builds on this strategy and sets out the start of a ten-year journey for the transformation which clearly states the role that NHS England has to play. The Mental Health data is crucial in monitoring progress against the Five Year Forward View. In particular, it will help: • Understand current patient pathways, what care is available now and what level of referrals to mental health services are anticipated to ensure 70,000 additional children and young people each year will receive evidence-based treatment. • Ensure that there will be the right number of CAMHS T4 beds in the right place reducing the number of inappropriate out of area placements. • Support at least 30,000 additional women each year to access evidence-based specialist perinatal mental health treatment. • Ensure that appropriate services are being commissioned to reduce the premature mortality of people living with severe mental illness (SMI); and 280,000 more people having their physical health needs met by increasing early detection and expanding access to evidence-based physical care assessment and intervention each year. • Ensure people with SMI can access evidence based Individual Placements and Support (IPS) • Ensuring that at least 60% of people with first episode psychosis starting treatment with a NICE-recommended package of care with a specialist early intervention in psychosis (EIP) service within two weeks of referral. • Support a comprehensive programme of work to increase access to high quality care that prevents avoidable admissions and supports recovery for people who have severe mental health problems and significant risk or safety issues in the least restrictive setting as close to home as possible. • Improve the quality of services commissioned, the case-mix of patients in treatment, population needs, the differences in success of treatment and care at practice, CCG, provider level and other geographies (e.g. regions) as well as the impact on other parts of the healthcare system, e.g. A&E. • Improve outcomes and tackle inequalities of people with MH problems. • Provide insight into suicide by looking at those with prior mental health problems, the severity and length of the problems and how many of those committing suicide also had wider physical health problems to help reduce the number of people taking their own by lives. • Enable the robust quality and performance planning and monitoring at a local and national level. • Make availability of home treatment visible in every part of England as an alternative to hospital • Check provision of all-age mental health liaison services to meet the national commitment that at least 50% will meet the service standard MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. NHS England therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS England have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion. Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS England needs to have absolute confidence that the two data sets are comparable and compatible. IAPT: The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines). The use of IAPT data will support the following priorities for service development: • Expanding services so that at least 1.5m adults access care each year by 2020/21. This means that IAPT services nationally will move from seeing around 15% of all people with anxiety and depression each year to 25%, and all areas will have more IAPT services. • Focusing on people with long term conditions. Two thirds of people with a common mental health problem also have a long term physical health problem, greatly increasing the cost of their care by an average of 45% more than those without a mental health problem. By integrating IAPT services with physical health services the NHS can provide better support to this group of people and achieve better outcomes. • Supporting people to find or stay in work. Good work contributes to good mental health, and IAPT services can better contribute to improved employment outcomes. • Improving quality and people’s experience of services. Improving the numbers of people who recover, reducing geographic variation between services, and reducing inequalities in access and outcomes for particular population groups are all important aspects of the development of IAPT services. In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems. To better understand the relationship between physical and mental health, NHS England intend to link SUS, Mental Health data and IAPT record level data that has been pseudonymised using a consistent pseudonym which has been derived for commissioning purposes. This is an area where the evidence is currently relatively weak. Linking SUS, Mental Health and IAPT data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS England cannot currently answer questions such as whether patients with MH issues are at a higher risk of particular outcomes (e.g. admissions, readmissions, increased lengths of stay).Therefore linking data is an important requirement. IAPT Pilot Data: The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is planned to release substantial savings across local health economies. In order to support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways. They need to identify cost savings / reductions in expected activity from the system as a result of integrated treatment of co-morbid physical and mental health problems, showing that they are realisable in practice. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams. Sites will be providing integrated psychological therapies in a range of settings: general practice, integrated care teams, community specialist care teams such as Diabetes or Respiratory, outpatients’ teams and community hubs. New and existing therapists will be co-located in general practice and form the first of the ‘3000 mental health therapists’ committed to in the General Practice Forward View. NHS England is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. The first wave of these sites are listed in Appendix A. To understand how Integrated IAPT services can be implemented and their effects, NHS England have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working. Additional data not captured in the IAPT Minimum Dataset is required in order to assess the impact of the Integrated IAPT Early Implementer services on patient outcomes and use of health services. Please see Appendix B for a list of data items being requested from the IAPT pilot data set. The additional measures are a modest extension of the existing IAPT dataset. The main change is simply an expansion of the list of disorder specific measures to match the expanded number of conditions being treated. In addition, there will be a short measure of self-reported healthcare utilisation to support the analysis of healthcare utilisation and savings. This information is needed to ascertain what the key components of successful interventions are, and the population groups they work best with. The use of the additional pilot data will support the following priorities for IAPT expansion: • Measuring changes in healthcare utilisation – showing the savings that can be realised by creating Integrated IAPT services. In addition to self-report measures of healthcare utilisation, it is important to link the IAPT MDS (plus the additional measures) to secondary healthcare datasets (SUS), including Inpatient dataset, Outpatient dataset, A+E dataset, and the Critical Care dataset, in order to identify savings elsewhere in the system. • Measuring outcomes from services accurately for people with long term conditions – using the additional outcome measures to understand how services support people with long term conditions and how this links to healthcare utilisation. • Understanding how integrated services can best be implemented – understanding variation in access, outcomes and treatment in different sites. Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services. Roll out is estimated to cost around £157 million in 18/19, £233m in 19/20, and £308m in 20/21, which is due to be funded from CCG baselines. Delivering new integrated services is expected to deliver substantial savings (£26m in 17/18, £122m in 18/19, £236m in 19/20, £364m in 20/21), with services quickly becoming self-sustaining. NHS England have contracted a team at Imperial College to undertake an evaluation of the pilot who have substantial experience in the use of routine data for evaluation of healthcare interventions. 111 Data: The 111 data is required to ensure that NHS England can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. It is essential that a national view of services is available to NHS England’s analysts. NHS England has a duty to ensure health services are provided in an integrated way. When exercising its functions, NHS England must do so with a view to securing that health services are provided in an integrated way where it considers that doing so would: (a) Improve the quality of services, including outcomes; (b) Reduce inequalities in access; (c) Reduce inequalities in outcomes. 44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS England requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS England nationally. These metrics are in pseudonymised, record level form The national UEC Dashboard will enable both CCGs and NHS England to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS England agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways. Specific purposes for this data include: 1. Proactive assurance of CCG-commissioned 111 services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities 2. Data quality analysis and data quality management, to ensure data processing has been carried out effectively 3. Better understanding of the effectiveness of changes to the operating model for urgent and emergency care (UEC), such as increasing the level of clinical input within 111 services as triage and sign-posting of patients that contact the service; to do this, NHS England will need to be able to understand the pathways that patients follow post contact with the 111 service in order to provide an evidence base for changes to these services. 4. Identification of quality differences nationally between different providers and opportunities to improve the efficiency of 111 services. The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is an innovative BI tool specifically developed by NECS to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users, as per the CCG’s DSA. North of England DSCRO will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set will be shared with Arden and GEM DSCRO in order to have the consistent pseudonym applied and subsequent upload to the tNR. This will enable the urgent care dashboard to be populated, which will allow NHS England to understand and benchmark urgent care patient flows and service provision. Further linkage with other tNR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS). South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS England in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions. The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers. In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account.

Expected Benefits:

Expected measurable benefits to health and/or social care including target date: General benefits applicable to all requested data sets 1. Analysis and reporting will help ensure that NHS England meets its statutory duties (as outlined above) to commission effective and efficient services in line with NHS England’s Five Year Forward View. 2. tNR to act as a proving ground for the Commissioner Assignment Methodology (CAM) and to convert the CAM methodology to a system algorithm. Benefits expected from commencement of provider implementation of the CAM include: a. Equitable distribution of resources b. More accurate identification of commissioners c. Improved performance data from providers for monitoring contract performance d. Consistency of approach makes national analyses easier and more accurate e. Efficient local processes for providers 3. Support analysis of development and monitoring outcomes for new models of care. 4. Developing improved methodology for calculation of commissioner budget allocations. 5. Provides robust findings on which complex changes to care are most effective, enabling large transformation programmes to improve the effectiveness of their interventions. For example, SUS data has been used extensively (monitoring trends in acuity of cases, investigating the characteristics of attenders, understanding the relationship between attendances and admissions, etc.) in the development of the recent A&E Plan. 6. Enable NHS England to make better use of existing data, without compromising data security and by using data that is pseudonymised to mitigate the risk of compromising patient privacy. 7. Reduced resources whilst delivering robust assessment of national programmes. 8. Supporting Quality Innovation Productivity and Prevention (QIPP) to review demand management, integrated care and pathways. a. Analysis to support full business cases. b. Develop business models. c. Monitor In year projects. 9. Supporting Joint Strategic Needs Assessment (JSNA) for specific disease types. 10. Enables monitoring of: a. CCG outcome indicators. b. Non-financial validation of activity. c. Successful delivery of integrated care within the CCG. d. Checking frequent or multiple attendances to improve early intervention and avoid admissions. e. Case management. f. Care service planning. g. Commissioning and performance management. h. List size verification by GP practices. i. Understanding the care of patients in nursing homes. 11. There have already been significant benefits realised from the use of activity data derived from SUS. NHS England now share a common understanding of activity levels across the system, which has enabled better local and regional performance management, as well as the development of national policies e.g. new demand and capacity plans for elective care. Better activity data has also enabled a more robust national planning process, and so improved the allocation of funds across the system. Additional benefits applicable to specific data sets Data set specific benefits, in addition to those listed above, include the following. Mental Health (MHMDS, MHLDDS, MHSDS) data will also support: 12. Increased access to Mental Health and IAPT data are widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow us to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS England need high quality data, and access to Mental Health and IAPT will allow the Data Controller (NHS England) to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs). 111 data will also support: 13. A reduction in unnecessary use of A&E. 14. An increase in referrals to alternatives to A&E. 15. Improvement to performance of A&E waiting times IAPT Pilot data will also support: 16. The IAPT Early Implementers pilot aims to measure healthcare utilisation as well as the mental and physical health benefits gained from the new services. NHS England aims to measure the impact of Integrated IAPT on treatment outcomes. Locally collected and nationally specified information to supplement the utilisation data will need to be included as necessary, for instance mental health outcomes, perception of physical health, and patient experience. 17. Service users and care providers will both benefit from the pilot, as it will allow NHS England to understand how Integrated IAPT co-located in and integrated with physical health services affects individuals’ mental and physical health, their healthcare utilisation, and their experience with IAPT. It will be possible to explore how characteristics of Integrated IAPT service models correlate with health care utilisation (e.g. measuring the outcomes for different service set ups – size of service, extent of integration with physical healthcare etc.) and understand how the characteristics of people accessing Integrated IAPT correlate with health care utilisation. It will be possible to understand which aspects of the service implementation contributed to changes in outcomes and to enable learning. This will help to inform the future commissioning and funding of Integrated IAPT services. 18. The benefits for patients in particular will be better access to psychological therapy for patients with physical long-term conditions and those with persistent medically unexplained symptoms, resulting from integrated services in physical healthcare pathways, specifically trained staff, and condition specific outcome measures. This will support IAPT services to reach the required 25% access rate set out in the Mental Health Five Year Forward View and to appropriately measure patient outcomes including recovery rates. This in turn will help to break down artificial barriers between physical and mental healthcare, and pave the way for further implementation of integrated healthcare services nationally.

Outputs:

Specific outputs expected, including target date: General outputs applicable to all requested data sets All datasets will be used to: 1. Allow NHS England to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’. 2. Realise data quality improvements initiatives including reports to ensure that NHS England data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived). 3. Provide an aggregate activity and finance report which will be used to populate an NHS England integrated activity and finance report for the monthly NHS England Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section). 4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping). 5. Facilitate proactive management of NHS England directly commissioned services using pseudonymised or aggregate data only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.) 6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS England. 7. Monitor and analyse outpatient and community services; alternatives to inpatient care. 8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow: - Analysis of inpatient services and activity for people with learning disability and/or autism - Analysis of outpatient and community services and activity for people with learning disability and/or autism - Analysis of patient pathways as patients move between services 9. Analyse factors that result in high service usage. 10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS England would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful. 11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement. 12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. 13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS England does not have sufficient information to drive service improvement in specialised commissioning. 14. Undertake health economic modelling using: a. Analysis on provider performance against targets. b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients. c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway. 15. Provide commissioning cycle support for grouping and re-costing previous activity. 16. Undertake commissioner reporting, including: a. Summary by provider view - plan & actuals year to date (YTD). b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD. c. Summary by provider view - activity & finance variance by POD. d. Planned care by provider view - activity & finance plan & actuals YTD. e. Planned care by POD view - activity plan & actuals YTD. f. Provider reporting. g. Statutory returns. h. Statutory returns - monthly activity return. i. Statutory returns - quarterly activity return. j. Delayed discharges. k. Quality & performance referral to treatment reporting. 17. Produce aggregate reports for CCG Business Intelligence. 18. Produce project / programme level dashboards. 19. Monitor acute / community / mental health quality matrix. 20. Facilitate clinical coding reviews / audits. 21. Undertake budget reporting down to individual GP Practice level. 22. Produce GP Practice level dashboard reports, including high flyers. Additional outputs applicable to specific data sets Outputs applicable to specific data sets include the following. SUS will also support: 23. Gap and reconciliation analyses between monthly activity returns versus SUS/CDS data. 24. Gap and reconciliation analyses between aggregate contract monitoring reports submitted to DSCROs versus SUS/CDS. Mental Health (MHMDS, MHLDDS, MHSDS) data will also support: 25. A Mental Health Five Year Forward View (5YFV) dashboard; delivered in response to the recommendation in the 5YFV. NHS England recently published a first version of this dashboard, which will allow us to hold national and local bodies to account for implementing the 5YFV strategy. The dashboard is structured around the core elements of the MH programme as set out in the 5YFV implementation plan, and include perinatal mental health, children and young people’s mental health and elements across the common, crisis and secure adult mental health pathway including health and justice and suicide prevention. NHS England require improved Mental Health/IAPT data to further develop some of the indicators in the dashboard. 26. To use the Mental Health data to support contract payment and clinical case management (and develop a reliance in this data flow akin to acute services and their use of SUS data). 27. Regular monitoring reports of commissioners (inpatient services) to meet NHS England’s statutory duties and to demonstrate the delivery of NHS England’s Learning Disability Programme by cross-referencing relevant activity with Assuring Transformation data, due to end in 2018 28. To support ongoing updates to the Mental Health Quality Dashboard using quality measures derived from the MHMDS and MHLDDS. (The current dashboard is under review to focus the measures further on quality and utilising the dataset will enable a wider availability of measures as well as robust data. The dashboard can be used by QSG, commissioners and providers for benchmarking and identifying areas for service improvement as well as to inform commissioning decisions.) 29. To support the development of Clinical Services Quality Measures (CSQMs) that provide an at-a-glance indication of how well services are performing. They have been/will be developed as composite measures for Psychosis and Dementia specifically as a series of metrics that, for example, will allow for comparisons between services such as units within hospitals; providing better information for patients clinicians and citizens. Supressed numbers currently available in the published reports do not allow annual aggregation to be input into the composites. The measures will be developed according to statistical principles and will be assured by clinical and technical experts. (NHS England is involving patients, the public, service providers and clinicians in the development of these measures with aggregate – service level information to be available via NHS Choices and My NHS.) 111 data will also support: 30. A single national system, white-labelled and provided locally to CCGs by each CSU through their local BI portal, from April 2017 31. Reporting and analysis to support the proactive assurance of CCG-commissioned 111 services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities, from April 2017 32. Data quality analysis and data quality management, to ensure data processing has been carried out effectively, from April 2017 IAPT pilot data will also support: 33. The provision of an Interim Report by October 2017, and a final report in 2018, by Imperial College on the IAPT Early Implementers programme. These reports will identify patient outcomes in these services, uptake rates of patients accessing the new Integrated IAPT services, the profile of patients being offered the services and those using them. It will also help identify groups that are under or over-represented and give insight into patient experience of the new services. Crucially, by analysing healthcare utilisation using the linked SUS/IAPT/IAPT pilot dataset, these reports will include an indication of whether the Integrated IAPT Early Implementers services have resulted in savings in the health system as well as the observable changes in healthcare utilisation. Only aggregated data summaries e.g. by patient cohorts will be produced and included in the reports. The aggregate IAPT reports produced by Imperial College will adhere to NHS Digitals disclosure control rules before being shared outside the organisation. For data from the Mental Health data sets, and any Mental Health data linked to SUS, the following disclosure control rules will be applied: - National level figures only may be presented unrounded, without small number suppression; - Suppress all numbers between 0 and 5; - Round all other numbers to the nearest 5; - Percentages can be calculated based on unrounded values, but need to be rounded to the nearest integer in any outputs; - In addition for Learning Disability data in Mental Health, the England level data also must apply the suppression of all numbers between 0 and 5, and rounding of other numbers to the nearest 5. 34. Analysis in detail of the mental and physical health outcomes being obtained by people using integrated services, and how service features influence outcomes. This analysis will support commissioners in implementation of integrated services across the NHS. The target commencement date for the above outputs is December 2016 for existing data sets and March 2017 for the 111 data, as agreed in previous applications (references can be found in the summary section. For IAPT Pilot data this refers to the approval for data to flow to NHS England and not the collection which has already commenced. The aim is to monitor changes on a monthly basis going forward.

Processing:

Processing activities: Data will only be shared with or processed by the parties listed in this application and will only be used for the purposes stipulated. Any further reports sent beyond the data controller and processors as stipulated in this agreement will contain aggregate data only, and will be subject to the disclosure controls of the relevant datasets. As part of the monitoring and evaluating of the transformation programmes, it will be necessary for the processed data to be enhanced by linking in publicly available contextual information on aggregate level. Examples of publicly available data include GP patient survey result aggregated to GP practice level (source: https://gp-patient.co.uk/surveys-and-reports), measures of deprivation aggregated at LSOA level* (source: https://data.gov.uk/dataset/english-indices-of-deprivation-2015-lsoa-level) and disease prevalence, again geographically aggregated (source: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases). AGEM CSU (in capacity of tNR host) Activities: Data will flow to AGEM DSCRO for pseudonymisation. The pseudonymised dataset will then flow to other data processors, as listed below, to undertake processing activities on behalf of NHS England for a specific project(s) under Service Level Agreements. • Data linkage between the data sets being requested in this application will be undertaken on pseudonymised record level data held within the tNR by NHS England data analysts operating under strictly controlled conditions and any inadvertent or malicious re-identification of data subjects will be recorded and reported in line with the NHS England’s incident (disciplinary) management process and appropriate action taken. A national feed of identifiable commissioning datasets (SUS, MHMDS, MHLLDS, MHSDS, IAPT and IAPT Pilot data) will be transferred from NHS Digital to Data Services for Commissioners Regional Office (DSCRO) AGEM who will complete data quality checks, pseudonymisation and validation of the data. • The DSCRO will apply the same pseudonymisation key to all NHS England required datasets in order to enable linkage by the AGEM CSU Data Processor (within the tNR). • DSCRO AGEM, in addition, also send a copy of identifiable SUS data to DSCRO North England. DSCRO North England collate all 111 data from all other DSCROs into a central processing area, link the 111 data with SUS data and transfer the data to DSCRO AGEM. • DSCRO AGEM securely transfer the following pseudonymised data (anonymised in accordance with the DSfC Anonymisation Requirements for Data used for Commissioning Purposes and in line with the ICO Anonymisation Code of Practice) to Arden and GEM CSU who act as NHS England’s main data processor: - SUS - Mental Health (MHMDS, MHLDDS, MHSDS) - IAPT - IAPT Pilot data - Linked SUS and 111 The data will be stored on a repository server within Arden and GEM CSU, known as the temporary national repository (tNR). In addition, an extract of linked SUS and 111 data will be shared with SCW CSU for specific additional processing, as detailed below. The IAPT pilot data will also be stored securely and logically separated from other tNR data sets and will only be made available to up to 5 NHS England analysts and up to 3 Data Services for Commissioners data management specialists who will be responsible for its processing or undertaking analysis to meet the statutory duties listed in this application. Any linkage with other datasets held on the tNR will only be permitted for purposes outlined in this agreement and users will be required to log any such linkage and the reasons for it. In addition, an anonymised extract of linked SUS, IAPT and IAPT pilot data will be shared with Imperial College London for specific processing, as detailed below. • The data will be processed in the tNR on behalf of NHS England (as recipient data controller) to meet the reporting requirements, by adding value to the data (e.g. adding a tariff and grouper) to support integrated patient care analysis. • Under strict access controls, NHS England’s analysts (including those based within CSUs) will use remote access arrangements to query the pseudonymised record level data which is held within the tNR in order for them to analyse the data. The data can be accessed remotely from multiple locations in England using secure VPN or the N3 network, depending on where NHS Analysts are based. Access is secured via two personal user IDs and passwords; one to login in the terminal services server giving access to the Arden GEM network domain and then a further login into the SQL Server environment where the user is given read-only access to the data. Further information surrounding tNR access management can be found at the end of this section. North England CSU (in capacity of urgent care dashboard host) In order to provide a national view of all UEC activity on behalf of NHS England to all CCGs, in addition to the transfer of linked SUS and 111 data from DSCRO North England to DSCRO AGEM, DSCRO North England also transfer the linked SUS and 111 data to North England Commissioning Support Unit (NECS) for further processing and in order to upload the data to the dashboard tool. The data flow sequence and arrangements are specified below: Activities: • North England DSCRO consolidate all 111 data collected by the other DSCROs into a central processing area. • AGEM DSCRO will supply a relevant extract of NHS England’s SUS data to North England DSCRO. • North England DSCRO link the 111 and SUS data to create a purpose-specific linked data set and flow the linked data to AGEM for upload to the tNR in pseudonymised form. • North England DSCRO also submit a pseudonymised extract to NHS England’s nominated CSU data processor – North East Commissioning Support (NECS). • NECS will further process the pseudonymised patient level data so that each CCG in the country is able to receive the 111 data relating to their patients only (as per local DSAs) and upload to the dashboard. • CCGs will also have the ability to see aggregate reports from the dashboard tool for the whole of England and their STP footprint which will enable them to benchmark their service providers and validate and analyse this across wider health economies in line with the statutory duties under the Health and Social Care Act 2012. Please note that the individual (209) CCG DSAs will be updated and approved by IGARD to capture the use of NECS for this processing, prior to NECS enabling CCG access to pseudonymised, record level SUS and 111 data. (NECS will work upon instruction from NHSE as Data Controller.) South, Central & West CSU (in capacity of National analytical support for 111) Activities: South Central West Commissioning Support Unit (SCW) will be provided with an anonymised 111 Minimum Dataset, linked with the anonymised SUS dataset for the period 2015/16, 2016/2017 and current 2017/18 up to 31st December 2017 for the delivery of the agreed SLA with NHS England. Data analysis will only take place on patient-level data where it has been pseudonymised and will include analysis of 111 and SUS data. SCW will produce four reports from the data (three interim and final). Data processing activities will include general completeness checks; validation will have taken place before the data is provided. SCW will then look at the changes in flow of patients through the 111 services and into onward providers where available and relevant. The key links will be with patients disposed from 111 to Emergency Departments. This analysis relies on matched 111 and accident and emergency data. The second stage of the analysis will look at patterns before and after the increase in clinical resource into Clinical Assessment Service (CAS). SCW intend to determine impact by comparing the differences in the change from this analysis and, by use of other nationally available comparators (ethnicity, deprivation, geography etc.), estimate impact of the intervention. The national 111 dataset should be available from 1st May 2017 and released on an on-going monthly basis. Access is limited to those substantive employees with authorised user accounts used for identification and authentication. The Health Foundation The Health Foundation has partnered with NHS England to deliver the Improvement Analytics Unit (IAU), which exists to support all NHS England’s major transformation programmes. The IAU will utilise data to help build a body of knowledge about which interventions and major new initiatives in the English NHS are successfully improving patient care and share that learning more widely. The unit supports delivery of NHS England’s commitment in the Five Year Forward View to evaluating the impact of major national programmes (such as the new care models). The IAU will expand NHS operational research and statistical methods to promote more rigorous ways of answering high impact questions in health services redesign. Activities: The Health Foundation (THF) will only be provided with access to or given extracts of the specific commissioning data they require in order to undertake their activities set out within the SLA or data processing agreement. Processing activities would only take place on patient-level data where it has been pseudonymised and would include: • Data quality checks • Data validation • Generation of ad-hoc analysis and reports to support specific projects Datasets: The Health Foundation will receive the following data flows: • SUS • Mental Health (MHSDS, MHLDDS, MHMDS) • IAPT Imperial College London In order to measure the impact of new integrated IAPT services and inform future rollout, NHS England has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS. Activities: Imperial College will only be provided with extracts of the specific commissioning data they require in order to undertake their activities set out within the contract, which includes access to full anonymised IAPT and SUS datasets for 2013/14, 2014/15, and 2016/17, plus current data up until 31st March 2018. They will use the data to analyse the performance of Integrated IAPT in terms of healthcare utilisation - including recovery, access, demographics, waiting times, as well as patient experience. Data analysis would only take place on patient-level data where it has been pseudonymised and would include analysis of IAPT (incl. pilot data) and SUS data and three reports (interim, draft, and final). Data processing activities will include general data quality checks and validation of the pilot data. Imperial will then produce a treated on the treated (TT) analysis - comparing those who were treated in an Integrated IAPT service to those who are as similar as possible but were not treated, looking to find a counterfactual for each treated person, which can reasonably proxy their outcomes had they been treated in terms of secondary health care utilisation. This analysis relies on matched IAPT data with SUS inpatients, outpatients and accident and emergency data. To find a suitable control group for those treated within Integrated IAPT services Imperial will use a matching algorithm with machine learning, which will include a number of SUS variables relating to the individuals visit to hospital (procedure details, diagnosis details etc.) in the matching process, along with their key demographics (age, gender, characteristics of their area of residence including socio-economic status etc.). The second stage of the analysis then relies on standard regression analysis. Having data for 3 years prior to the intervention will ensure there are large enough samples to find appropriate controls for matching with those who have been treated in an Integrated IAPT service. This will allow us to test whether the treated and control sites are statistically similar, in that they show common trends in outcomes before the intervention. It is standard to look at this over a number of years: 3 years is generally the minimum that would be required. Imperial intend to analyse changes in healthcare utilisation as follows: 1. By using matching techniques to identify the controls for the treated patients (hence the need for 3 years data prior). We will possibly use machine learning techniques to enable us to exploit the rich data in SUS on patient comorbidities and diagnoses. 2. Then comparing the healthcare utilisation of the treated group using data from SUS on inpatient, outpatient and A and E attendances pre- and post-reform. 3. Undertaking a similar analysis for the control sample. 4. Comparing the differences in the change for the treated and control groups and use this as an estimate of the impact of the policy. Imperial will disaggregate by type of utilisation and also by patient groups and by other dimensions which are important (for example, measures of SES). Timescales: An initial extract of the above historic datasets will be provided to Imperial College on approval of the application. Subsequent releases will be based on the requirements of the project and adhere to DSA and DPA conditions. For this it will be crucial that the pseudonym remains the same for the duration of this programme, so new monthly extracts can be linked to historical extracts. Imperial College’s security arrangements are outlined in the attached Data Security Policy, which includes role based access controls, a secure server environment, and log in security. Only three individuals who are directly working on this analysis will be able to access the data. Access is limited to those employees with authorised user accounts used for identification and authentication. tNR Access Management NHS England will limit the amount of pseudonymised data which is made available to analysts. Where access to the tNR is required by internal users (based within NHSE and CSUs), a robust user registration process is in place, which involves: • Sign-off by the analyst’s lead manager to ensure that all users have a suitable level of knowledge about SQL Server and tNR processed data. • Submission of an access request application, outlining the purposes for which they require access. • The IAO of the tNR assessing the request to ensure that it is in line with the agreed purposes included in the data sharing agreement. Once access to data on the tNR is granted, according to the role and user requirements, access is secured by using 2 factor authentication, via VPN and on the N3 network. As recipient data controller, NHS England are responsible for and will ensure that the use of the data is in line with the NHS Digital data sharing framework contract and data sharing agreement and will take all steps necessary to minimise the risk of inadvertent or malicious re-identification. NHS England believe that the wider benefits of using the data to meet its statutory duties to ensure that patients receive the most appropriate care outweigh the extremely low risk of re-identification from the processing activities required. Access is limited to those substantive employees with authorised user accounts used for identification and authentication. *a LSOA is a small geographical area typically covering about 1500 people


Project 2 — DARS-NIC-389823-P1P6B

Opt outs honoured: No - Assuring Transformation is disclosed under the following approval: Enhanced Quality Assurance Process Data flow - CAG 8-02 a-c/2014, No - data flow is not identifiable (Section 251 NHS Act 2006)

Sensitive: Sensitive, and Non Sensitive

When: 2016/12 — 2020/07.

Repeats: Ongoing, Monthly

Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Identifiable, Anonymised - ICO code compliant

Datasets:

  • Monthly Subscription Assuring Transformation
  • Assuring Transformation (Identifiable)
  • Assuring Transformation (Pseudo)

Objectives:

Use monthly and weekly Assuring Transformation (AT) data to derive performance and quality indicators for Learning Disability services, in order to drive improvements in the services and to identify where good/poor practice is taking place. Analysis will be carried out by NHS England analysts. The analysts will use the fully identifiable data set to produce useful analysis for operational managers and LD Programme staff. The analysis they produce will not include identifiable information. (b) Use timely operational management information, to allow NHS England to monitor and manage delivery of Transforming Care improvements to care for inpatients with a learning disability, behaviour which challenges or an autism spectrum disorder. Unsuppressed small numbers are included in this data set to ensure that commissioners are carrying out their duties in relation to discharging people with a learning disability who are placed inappropriately in hospital. Each CCG is likely to have small numbers in each category and it is important to be able to track if they have reduced their number from e.g. three to two, which unsuppressed numbers do not allow. The operational management report cannot be used for its intended purpose of monitoring commissioner CCG-level activity unless it is populated with unsuppressed data. NHS Digital will be supplying operational management information reports to NHS England on a frequent weekly basis. NHS England will not be doing any processing, but will be using the reports as produced by NHS Digital to manage CCG performance. The new data fields in the AT data set give further insight into delivery of improvements, specifically the Care & Treatment Review process which is used to identify patients suitable for discharge and the barriers currently preventing discharge. Including the new AT fields in the extracts and reports sent to NHS England will facilitate targeted work to discharge patients who have been identified as ready to be discharged from inpatient care. (c) Use information on the location of services and the number of patients using these services to effectively plan and deliver transformational change, reducing the reliance on inpatient care for people with learning disability and/or autism. Planning and delivery will be carried out by Transforming Care Partnerships (TCPs) - CCGs, specialised commissioners and local authorities working together to ensure appropriate and effective services are put in place for this vulnerable group of people. TCPs are responsible for the delivery of the transformation of services, reducing the reliance on inpatient care and using local services to help people live in the community. This will ensure people with learning disability and/or autism receive effective and appropriate care close to their homes. To be able to plan and deliver these new services, TCPs need to have reliable detailed data about the people currently in hospital who originate from their CCGs / local authorities. This will allow them to put appropriate services in place for when patients leave hospital, and to ensure the appropriate provider capacity is available for those people that do still require hospital care. No TCP would see another TCP's unsuppressed data.

Yielded Benefits:

The data has provided operational managers with the evidence base through which to drive improvements in services and patient experience, to reduce the reliance on inpatient care and to manage the safe discharge of inpatients to the community. Commissioners have been able to monitor progress against planned trajectories for reductions in inpatient numbers and take prompt action when performance has fallen below expectation. AT data has been used as the baseline to monitor performance against the new Care and Treatment Review (CTR) Policy which took effect from 1 April 2017, helping to reduce the number of people going into these hospitals as well as to improve the quality of care people receive in hospital. Transforming Care Partnerships (TCPs) have been able to sue the data to effectively plan and commission appropriate services, and to reduce the reliance on inpatient care. More effective commissioning of any required inpatient services will save the NHS money, reducing the need for spot-purchasing of care and lengthy block contracts with providers. NHS England has been able to monitor patients at commissioner level, and identify blockages which are preventing patients being discharged. NHS England has also been able to carry out specific pieces of analysis, such as detailed work on the u-18 age group.

Expected Benefits:

The data gives insight at organisational (provider/commissioner) level, the benefits are that operational managers will have an evidence base through which to drive improvements in services and patient experience. As soon as this evidence base is available actions can be taken to begin these improvements. Without this evidence base targeted work to improve services and patient experience cannot take place. The data enables performance management of trajectories to reduce inpatient numbers. The information will be used day-to-day, to reduce the reliance on inpatient care and to manage the safe discharge of current inpatients to the community. Benefits will flow immediately as NHS England national and regional managers are able to take immediate action when necessary. Commissioners are developing trajectories for inpatient numbers to March 2017 and these reports will help manage delivery of these trajectories. As well as an in-year delivery target commissioners are developing three-year (2016/17 - 2018/19) transformation plans in line with the published national transformation plan Building the Right Support. Operational management data is important for helping manage delivery of these plans, to ensure any deviation from trajectory is identified early and can be acted on. Detailed information is required by TCPs to plan and commission effectively. The additional request to share detailed data with TCPs will allow TCPs to effectively plan and commission appropriate services, and to reduce the reliance on inpatient care. It will enable patients to be moved from inappropriate inpatient facilities to community care which is closer to home and more appropriate to each individual's needs, improving their quality of life. More effective commissioning of any required inpatient services will save the NHS money, reducing the need for spot-purchasing of care and lengthy block contracts with providers. The data already received by NHS England has allowed them to carry out detailed analysis to support delivery of the Transforming Care programme, in particular the objective of reducing the reliance on inpatient care. NHS England has been able to monitor patients at commissioner level, and identify blockages which are preventing patients being discharged. NHS England have been able to carry out specific pieces of analysis, such as detailed work on the u-18 age group – this has contributed to the reduction in the number of u-18 patients. Changes to the contents of the data set in 2015 included the ‘CCG of origin’ field which has enabled NHS England to map patients whose care is specialised-commissioned by NHS England (over half the inpatient total) to be mapped to their home CCG. This is vital to the process of planning services – without this information local Transforming Care Partnerships (TCPs) do not understand the total number of inpatients that they need to be planning services for. Using this information TCPs have been able to develop 3-year transformation plans. Amending the agreement to allow NHS England to share unsuppressed data with TCPs will allow TCPs to properly and accurately complete these plans, giving them a full understanding of their inpatient numbers and the services these patients are using.

Outputs:

(a) Outputs are aggregated commissioner-level analysis, used for internal management purposes. The monthly data and analysis allow local operational managers to ensure commissioners are delivering national performance indicators, and to intervene when they are not. (b) The operational MI outputs will only be available to operational managers within NHS England. No other organisations will have access to this data. This information will not be used or shared outside NHS England. [Note that this is a weekly output - section 9 of this template does not include 'weekly' as an option in the Frequency table] Analysis will not be published in journals or be used in relation to clinical trials, nor used for direct marketing. Performance dashboards and other analysis will be used internally and with commissioners once the Management Information has been published by NHS Digital. These will be in aggregated form only. NHS Digitals’ guidance on suppression of small numbers will be followed. (c) Aggregate, unsuppressed TCP-level reports showing the numbers of patients at each provider site, the number of patients at each level of ward security and the numbers of patients in hospital split by length-of-stay groups. This will be used to plan services and identify services which will be decommissioned as services are transformed and bed numbers are reduced.

Processing:

Data will not be stored, processed or in any other way accessible by a third party. Data is stored in the secure storage that was set up when NHS England managed this data collection themselves. (a) Monthly data will be analysed to produce aggregate level reports, to allow operational managers to work with challenged organisations to improve delivery and performance against key national indicators. Patient level data will be accessible only to those named individuals that have been given access to the secure data storage, and will only be accessed in the safe haven environment set up for this purpose. (b) NHS Digital supplies operational management information reports to NHS England on a weekly basis. NHS England does not carry out any processing, but ensures the operational MI reports are provided to the named operational managers, who use the reports generated as produced by NHS Digital to manage CCG performance. (c) NHS England will supply data to TCPs to allow them to plan and deliver transformational change to services for people with learning disabilities and/or autism. To allow them to effectively plan and deliver these services they need access to unsuppressed data showing the number of patients originating from the TCP at each hospital site. The data supplied to each TCP will only include information for patients originating from that TCP, and will not include NHS number, date of birth or home postcode.


Project 3 — DARS-NIC-266008-T3S9D

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/03 — 2019/03.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

The National Cancer Waiting Times Monitoring DataSet (NCWTMDS) is a national, patient level data collection by NHS Digital, under a Direction from NHS England (NHSE). The data are used for monitoring times taken to diagnose and treat patients with cancer and ensure these are in line with the expectations and rights of patients in the NHS Constitution. As a patient moves through the stages of their treatment pathway, data on referrals, treatments and diagnosis are derived from care records locally. The NCWTMDS provides the data used to publish the official cancer 62 day treatment target which is one of the key national statistics used to monitor the performance of the NHS. After collection, the cancer waiting times data can also be queried by NHS organisations, cancer networks and the Department of Health to provide reports and feedback on the progress towards meeting these targets. The NHS Long term plan states: "For all major conditions, the quality of care and the outcomes for patients are now measurably better than a decade ago. Childbirth is the safest it has ever been, cancer survival is at an all-time high, deaths from cardiovascular disease have halved since 1990, and male suicide is at a 31-year low. But there is good evidence to suggest that over the next decade the NHS should be doing even better. Partly that’s because there’s currently too much variation in service quality between clinical teams and between different parts of the country. Partly we’ll need to improve by tackling previously unmet need – for example in young people’s mental health services. And partly we’ll be able to do better because the worldwide frontier of medical possibility will continue to advance." NHS England require additional information to understand variation in cancer standard achievement and ultimately cancer outcomes. In addition to the access granted under DARS-NIC-192305-X3T0Y-v3.2 NHS England requires access NCWTMDS for the following purpose(s): 1. The Operations and Information directorate require NCWTMDS linked to deprivation data to allow understanding of associations between deprivation and cancer waiting times 2. The Operations and Information directorate require NCWTMDS linked to age and gender to understand whether standardising for these factors influences overall outcome achievement. The data cannot be used for any other purpose than that stated above. The data will not be shared with any third party. Data will only ever be used for purposes relating to healthcare or the promotion of health in line with the requirements of the Health and Social Care Act 2012 as amended by the Care Act 2014. Any record level data extracted from the system will not be processed outside of the analytics team, with only aggregate data to be shared with other NHS England teams.

Expected Benefits:

This additional analysis will allow NHS England to better understand the impact of deprivation on access and effectiveness of cancer pathways and to assess the value of routinely adding additional derivations to the NCWTMDS. The additional requested data attributes LSOA and IMD_Rank will be used to understand how deprived an area of residence is, and the additional fields Gender and Age will test the impact of standardisation i.e. to test if degree of inequality varies by age and gender. Enabling analysis of the Cancer Waiting Times data on a system wide basis will provide insight to focus service improvements on most effective areas to improve performance. In particular you would expect that access to the data be essential to delivery of the Cancer Waiting Times standards: • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard • 28 day referral to diagnosis - TBC

Outputs:

NHS England will use this data for the specific purpose of understanding whether there is an association between deprivation, age and gender and cancer waiting times. This is a one-off piece of analysis for internal purposes and will be used to understand the value of further work in this area. Additional work and any routine derivation of deprivation, age and gender will need subsequent amendments or new data sharing agreements to be put in place. All outputs will contain only data that is compliant with the relevant disclosure control rules including suppression and rounding.

Processing:

Data will only be accessed by individuals within NHS England who have authorisation from the SIRO or IAO to access the data for the purposes described, all of whom are personnel working under appropriate supervision on behalf of NHS England. Following completion of the analysis any record level data will be securely destroyed. The data will not be used for commercial use. The data will not be linked with any record level data and there will be no requirement nor attempt to re-identify individuals from the data. The raw data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with appropriate disclosure controls, such as Official Statistics. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by Personnel (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).


Project 4 — DARS-NIC-204575-V7X8H

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the Wessex Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England.Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. Wessex Cancer Alliance NHS England will directly access the Cancer Waiting Times System on behalf of Wessex Cancer Alliance across Wessex (Dorset ICS and Hampshire and Isle of Wight STP). Wessex Cancer Alliance is hosted by NHS England and covers a population of approximately 2.8 million people. NHS England works with health organisations across Wessex including 7 acute providers, 8 clinical commissioning groups, 3 community providers and 10 hospices. Acute Providers •Dorset Country Hospital NHS Foundation Trust; Hampshire Hospitals NHS Foundation Trust; Isle of Wight NHS Trust; Poole Hospital NHS Foundation Trust; Portsmouth Hospitals Trust; Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust; University Hospital Southampton NHS Foundation Trust CCGs • Dorset CCG, Fareham & Gosport CCG, Isle of Wight CCG, North Hampshire CCG, Portsmouth CCG, South Eastern Hampshire CCG, Southampton City CCG, West Hampshire CCG Community Providers • Southern Health NHS Foundation Trust; Solent NHS Trust; Dorset Healthcare University NHS Foundation Trust Hospices • Earl Mountbatten; Rowans; Countess Mountbatten; Oakhaven; St Michaels; Countess of Brecknock; Lewis Manning; Forest Holme; Joseph Weld; Macmillan Unit, Christchurch Hospital. Data access The CWT system provides one organisation (the lead organisation) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool NHS England will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to Wessex Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations. Investigating breaches NHS England routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts Lead organisations will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. NHS England will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. NHS England use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners (Acute Providers, CCGs, Community Providers & Hospices) and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners (Acute Providers, CCGs, Community Providers & Hospices) responsible for direct patient care for that patient. This will be for local clinical audit purposes. The two broad purposes for this would be; 1) To support local clinical audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Local Clinical Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only the lead organisation NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the NHS England unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs NHS mail (nhs.net) Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS England South East, NHS South West and the National Cancer Team within NHS England. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the Data Controller in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 5 — DARS-NIC-204571-R1F4T

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the East of England Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. East of England Cancer Alliance NHS England will directly access the Cancer Waiting Times System on behalf of East of England Cancer Alliance across Cambridgeshire, Bedfordshire, Hertfordshire, Essex, Norfolk, Suffolk and Milton Keynes. East of England Cancer Alliance is hosted by NHS England East and covers a population of 6.3 million people. NHS England works with health organisations across England Acute Providers •Basildon and Thurrock University Hospital Trust Bedford Hospital Cambridge University Hospital Colchester Hospital East and North Herts NHS Trust Hinchingbrooke Health Care Trust Ipswich Hospital James Paget University Hospital Trust Luton and Dunstable University Trust Mid Essex Hospital Norfolk and Norwich University Hospital Papworth Hospital Peterborough and Stamford Hospital Southend University Hospital Queen Elizabeth Hospital Kings Lynn The Princess Alexandra Hospital West Herts Hospital West Suffolk Hospital Milton Keynes University Hospital CCGs • Basildon and Brentwood CCG • Bedfordshire CCG • Cambridgeshire and Peterborough CCG • Castle Point and Rochford CCG • East and North Hertfordshire CCG • Great Yarmouth & Waveney CCG • Herts Valleys CCG • Ipswich and East Suffolk CCG • Luton CCG • Mid Essex CCG • North East Essex CCG • North Norfolk CCG • Norwich CCG • South Norfolk CCG • Southend CCG • Thurrock CCG • West Essex CCG • West Norfolk CCG • West Suffolk CCG Community Providers Cambridgeshire Community Services East Coast Community Healthcare Hertfordshire Community NHS Trust Norfolk Community Health and Care NHS Trust South Essex Partnership University NHS Foundation Trust Suffolk Community Healthcare Hospices Arthur Rank Bedford Day care Hospice East Anglia Childrens Hospice Fair Haven Hospice Farleigh Hospice Garden House Hospice Hospice of St Francis Isobel Hospice Keech Hospice Care for Adults Keen Hospice Care for children Little Havens Childrens Hospice Peace Hospice Care Rennie Grove Hospice Care Data access The CWT system provides one organisation (the lead organisation) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool Lead organisations will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to East of England Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations. Investigating breaches Lead organisations routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts Lead organisations will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. Lead organisations will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. Lead organisations use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCGs that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCGs they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing bench-marked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners (Acute Providers, CCGs, Community Providers & Hospices) responsible for direct patient care for that patient. This will be for local clinical audit purposes. The two broad purposes for this would be; 1) To support local Clinical audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only the lead organisation NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the NHS England unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCGs that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCGs that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs: NHS mail (nhs.net) Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS Improvement, Public Health England, and also with East of England Cancer Alliance's constituent STPs, CCGs and hospital trusts. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the Data Controller in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 6 — DARS-NIC-204559-J4H7T

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive, and Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the Lancashire and South Cumbria Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. NHS England will directly access the Cancer Waiting Times System for the Lancashire & South Cumbria Cancer Alliance region, which covers a population of 1.7 million people. Lancashire and South Cumbria Cancer Alliance works with health organisations across Lancashire and South Cumbria including 4 acute providers, 8 clinical commissioning groups. Acute Providers RXL Blackpool RXR East Lancashire RXN Lancashire Teaching RTX Morecambe Bay CCGs 00Q NHS Blackburn with Darwen CCG 00R NHS Blackpool CCG 00X NHS Chorley and South Ribble CCG 01A NHS East Lancashire CCG 02M NHS Fylde & Wyre CCG 01E NHS Greater Preston CCG 01K NHS Morecambe Bay CCG 02G NHS West Lancashire CCG Data access The CWT system provides one organisation (the lead organisation - in this case NHS England) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool NHS England will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to Lancashire & South Cumbria Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations. Investigating breaches NHS England routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts NHS England will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. NHS England will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. NHS England's use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes. The two broad purposes for this would be; 1) To support audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by Lancashire and South Cumbria Cancer Alliance previously include:- · Produced Cancer Waiting Times Reports each month which look at performance by tumour type – helps with pathway work per cancer type · Also breach reasons we have used to identify issues with trusts such as capacity issues and also looking at demand in terms of 2 week wait referrals · Trends over time to see seasonal differences

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the Lancashire & South Cumbria Cancer Alliance unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs will be using the cloud with multiple layers of security. Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NSSGs, Boards and those within the Alliance who requires data. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by NHS England in fulfilment of their public health function. The Cancer Alliance will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 7 — DARS-NIC-204557-F0N1T

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the Thames Valley Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. Thames Valley Cancer Alliance NHS England will directly access the Cancer Waiting Times System for the Thames Valley Cancer Alliance region, which covers a population of 2.3 million people. Thames Valley Cancer Alliance works with health organisations across Thames Valley including [6] acute providers and [6] clinical commissioning groups. Acute Providers RD8 - Milton Keynes General NHS Trust, RTH - Oxford University Hospitals NHS Foundation Trust RXQ - Buckinghamshire Healthcare NHS Trust, RN3 - Great Western Hosptials NHS Foundation Trust RDU - Frimley Health Hospital NHS Trust RHW - Royal Berkshire NHS Foundation Trust CCGs 04F NHS Milton Keynes CCG 10Q NHS Oxfordshire CCG 14Y NHS Buckinghamshire CCG 15A NHS Berkshire West CCG 15D NHS East Berkshire CCG 12D NHS Swindon CCG Data access The CWT system provides one organisation (NHS England) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool NHS England will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to Thames Valley Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations. Investigating breaches Lead organisations routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts Lead organisations will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. NHS England will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. NHS England's use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes. The two broad purposes for this would be; 1) To support audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by Thames Valley Cancer Alliance previously include:- 1) The inter-trusts referral analysis – to identify the gap and breaches by tumour sites and between trusts. This helps to improve the patient pathway. 2) Tumour sites specific pathway analysis: Prostate cancer – to analyse and identify the gap and breaches e.g. understand 14 days, 31 days and 62 days gaps, treatment modality and inter-Trust issue.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the Thames Valley Cancer Alliance unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is the Cloud (Shared drive within Cancer Alliance). Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS England, Providers and CCGs within Thames Valley. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by NHS England in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 8 — DARS-NIC-204550-N7M4D

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive, and Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the Kent and Medway Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. Kent and Medway Cancer Alliance NHS England will directly access the Cancer Waiting Times System for the Kent and Medway Cancer Alliance region, which covers a population of 1.8 million people. Kent and Medway Cancer Alliance works with health organisations across South, East of England including 4 acute providers, 8 clinical commissioning groups, 1 community providers and 4 hospices. Acute Providers Maidstone and Tunbridge Wells Medway Maritime Foundation Trust Dartford and Gravesham NHS Trust East Kent Hospitals Foundation Trust CCGs South Kent Coast Canterbury and Coastal Ashford Thanet West Kent Medway Swale Dartford Gravesham and Swanley Community Providers Virgin Care Hospices Heat of Kent Hospice Hospice in the Weald Demelza House Pilgrims Hospice Data access The CWT system provides one organisation (NHS England) representing the Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool NHS England will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to South, East of England Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by NHS England. Investigating breaches NHS England will routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts NHS England will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus. iView Plus uses cube functionality to allow NHS England to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. NHS England will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. NHS England’s use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. NHS England will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes. The two broad purposes for this would be; 1) To support audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by this Cancer Alliance previously include:-:- - Baselining mapping work with acute providers to understand cancer pathways, - Monthly reports to inform discussions with Acute Provider CEOs, Cancer Clinicians and Cancer Managers across the area, - Information to support the development of transformational funding bids which focus on pilot work on vague symptom pathways, clinical - Triage and patient navigator work. - Data to support clinical discussions within their 12 Tumour Site Specific Group Meetings.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via NHS England’s Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between NHS England and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the Alliance unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is via email. Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including [National Cancer Programme Team or other NHSE / NHSI colleagues regionally or nationally. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by NHS England in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 9 — DARS-NIC-204544-H5L0S

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/09 — 2019/12.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS England. NHS England is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - NHS England. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance NHS England will directly access the Cancer Waiting Times System on behalf of Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance across South West England. Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance are hosted by NHS England and collectively cover a population of 4.7 million people. The Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance works with health organisations across South West England including 13 acute providers, 8 clinical commissioning groups. Acute Providers Gloucestershire Hospitals NHS Foundation Trust North Bristol NHS Trust Royal United Hospitals Bath NHS Foundation Trust Salisbury NHS Foundation Trust University Hospitals Bristol NHS Foundation Trust Weston Area Health NHS Trust Northern Devon Healthcare NHS Trust University Hospitals Plymouth NHS Trust Royal Cornwall Hospitals NHS Trust Royal Devon and Exeter NHS Foundation Trust Taunton and Somerset NHS Foundation Trust Torbay and South Devon NHS Foundation Trust Yeovil District Hospital NHS Foundation Trust CCGs Bath and North East Somerset Gloucestershire Bristol, North Somerset and South Gloucestershire Wiltshire Kernow Somerset Northern, Eastern and Western Devon South Devon and Torbay Data access The CWT system provides one organisation (NHS England ) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool NHS England will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to the 8 CCG's listed above Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by NHS England. Investigating breaches NHS England routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts NHS England will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow NHS England to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. NHS England will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. NHS England use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. NHS England will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes. The two broad purposes for this would be; 1) To support audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by this Cancer Alliance previously include:-:- - Baselining mapping work with acute providers to understand cancer pathways, - Monthly reports to inform discussions with Acute Provider CEOs, Cancer Clinicians and Cancer Managers across the area, - Information to support the development of transformational funding bids which focus on pilot work on vague symptom pathways, clinical - Triage and patient navigator work. - Data to support clinical discussions within their 12 Tumour Site Specific Group Meetings.

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). NHS England users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the Peninsula Cancer Alliance and Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is via NHS Mail. Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS England, NHS Improvement, local CCGs and Providers . Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the NHS England in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 10 — DARS-NIC-204535-L4S1P

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive, and Sensitive

When: 2019/09 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

This agreement is for the East Midland Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by Nottingham University Hospitals NHS Trust. Nottingham University Hospitals NHS Trust is therefore the lead organisation, and the data controller who processes data. In this agreement, therefore, all references to accessing the data refer to the legal entity - Nottingham University Hospitals NHS Trust. Improvements for Cancer patients The independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. Cancer Alliances Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard. https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/ Cancer Wait Times (CWT) system The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments. The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets. East Midlands Cancer Alliance Nottingham University Hospitals NHS Trust will directly access the Cancer Waiting Times System for the East Midlands Cancer Alliance region, which covers a population of 4.7 million people. East Midlands Cancer Alliance works with health organisations across the East Midlands including 7 acute providers and 19 clinical commissioning groups. Acute Providers Kettering General Hospital Northampton General Hospital Nottingham University Hospitals Sherwood Forest Hospitals United Lincolnshire Hospitals University Hospitals of Derby and Burton University Hospitals of Leicester CCGs Corby East Leicestershire and Rutland Erewash Leicester City Lincolnshire East Lincolnshire West Mansfield and Ashfield Nene Newark & Sherwood Nottingham City Nottingham North and East Nottingham West Rushcliffe South Lincolnshire South West Lincolnshire Southern Derbyshire West Leicestershire Data access The CWT system provides one organisation (Nottingham University Hospitals NHS Trust) representing each Cancer Alliance, with access to the following; a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool Nottingham University Hospitals NHS Trust’s will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to East Midlands Cancer Patients. A) Aggregate reports including small numbers Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by Nottingham University Hospitals NHS Trust. Investigating breaches Nottingham University Hospitals NHS Trust routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/CCG combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression. Mitigating risk of re-identification Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode. Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc. B) Pseudonymised record level extracts Nottingham University Hospitals NHS Trust will access record level pseudonymised data which includes the system generated pseudo CWT patient ID. Any record level data extracted from the system will not be processed outside of the authorised users of the system. C) i-View Plus . iView Plus uses cube functionality to allow Nottingham University Hospitals NHS Trust to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation. iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to CCG level and other health hierarchies. Nottingham University Hospitals NHS Trust will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements. Nottingham University Hospitals NHS Trust’s use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders; Purpose One - Aggregate local reports Generation of routine Cancer Waiting Times reports at Provider (Trust) or CCG level. Nottingham University Hospitals NHS Trust will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful. Examples of this type of analysis include: a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs across the geography b. Analysis of Cancer Waiting Times performance by treatment modality c. Grouping length of waits for standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks h. Reviewing routes to diagnosis of patients i. Quantifying treatment volumes by provider organisation including analysis treatment rates Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes. The two broad purposes for this would be; 1) To support audit work 2) Investigate individual outliers to the national standards Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts. Examples of the types of reasons for this include; a. Patients waiting excessively long period of time to seen of received treatment b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlights numbers of patients who are not told in person by provider d. Audits to review orphan records which require local providers to review local patients records Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Yielded Benefits:

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience. Examples of specific work undertaken by East Midland Cancer Alliance previously include:- · Analyse 62 day performance across the region by trusts/ CCG and tumour site to understand problem areas and help us achieve future targets. · Analyse number 2WW referrals and 2WW performance across the region by trusts/ CCG and tumour site. · Analyse 31 day performance across the region by trusts/ CCG and tumour site. Using number of 31 day patients as a proxy for diagnosis. · Anonymised record level data would allow us to calculate mean wait times with 95% CI as well as other statistical tests. · Perform detailed trend analysis and create statistical process control charts of each target. Using a before and after approach to look at the impact of Cancer Alliance funding on priority areas

Expected Benefits:

1) Benefits type: Supporting delivery of CWT standards The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020. A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards, and mitigate the risk of similar delays for other patients. Improvement would be expected on an on-going basis with standards already in place for nine standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020 2) Benefits type: Improvements beyond constitutional standards This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates. The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. For both of these improvements to the diagnostic and treatment pathways are key, and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

Outputs:

Outputs fall into the following categories: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust. The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

Processing:

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally-determined and locally-specific analyses to support the Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer. Only the lead organisation, Nottingham University Hospitals NHS Trust, will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the Nottingham University Hospitals Trust servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs. The CWT system is hosted by NHS Digital, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality. Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS Digital via Nottingham University Hospitals NHS Trust’s Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between Nottingham University Hospitals NHS Trust and NHS Digital. Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password). Nottingham University Hospitals NHS Trust users will access: a) Aggregate reports (which may include unsuppressed small numbers) b) Pseudonymised record level data - users can directly download this data from the CWT system c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data). Any record level data extracted from the system will not be processed outside of the Nottingham University Hospitals NHS Trust unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed. Users are not permitted to upload data into the system. Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to). The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs NHS mail to NHS mail. Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers. Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts. As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS England Midlands and East. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data. Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance. Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by Nottingham University Hospitals NHS Trust in fulfilment of their public health function. The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include: 1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs. b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays. e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered) f. Analysis of flows of patients including analysis by provider trust site g. Outlier identification including exceptionally long waits to inform individual queries to providers 2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.


Project 11 — DARS-NIC-192305-X3T0Y

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2019/10 — 2020/07.

Repeats: System Access

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • National Cancer Waiting Times Monitoring DataSet (CWT)

Objectives:

The National Cancer Waiting Times Monitoring DataSet (NCWTMDS) is a national, patient level data collection by NHS Digital, under a Direction from NHS England (NHSE). The data are used for monitoring times taken to diagnose and treat patients with cancer and ensure these are in line with the expectations and rights of patients in the NHS Constitution. The NHS Digital NCWTMDS online system allows NHS providers to record data derived from patient care activity. This data can be used to: •monitor cancer waiting times targets •plan service improvements As a patient moves through the stages of their treatment pathway, data on referrals, treatments and diagnosis are derived from care records locally. The NCWTMDS provides the data used to publish the official cancer 62 day treatment target which is one of the key national statistics used to monitor the performance of the NHS. After collection, the cancer waiting times data can also be queried by NHS organisations, cancer networks and the Department of Health to provide reports and feedback on the progress towards meeting these targets. The NCWTMDS System will provide for NHS England online access to: 1. Record level patient data (anonymised, without a record ID or pseudonym) 2. Aggregate data (pre-defined tabulations, without disclosure control i.e. small number suppression) Some organisations accessing the NCWTMDS system are permitted to download data containing the identifier NHS number, or containing a pseudonymised record identifier; however under this agreement NHS England will not be permitted to have access to that level of data, and can only access record level anonymised data (with no pseudonymised ID) and aggregate data. NHS England previously had access to the dataset via Open Exeter, from Spring 2018 the dataset will be accessed via the new Cancer Waiting Times System and NHS Digital iView tool https://www.digital.nhs.uk/tools-for-accessing-data/iView-and-iViewPlus NHS England requires access to the system for the following purpose(s): 1. The national analytics team will use record level data to produce monthly and quarterly Official Statistics. 2. Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance management. The data cannot be used for any other purpose than that stated above. The data will not be shared with any third party. Data will only ever be used for purposes relating to healthcare or the promotion of health in line with the requirements of the Health and Social Care Act 2012 as amended by the Care Act 2014. Any record level data extracted from the system will not be processed outside of the analytics team, with only aggregate data to be shared with other NHS England teams. This agreement supercedes any previous data sharing agreements in place to access this dataset via Open Exeter.

Yielded Benefits:

• Publication of monthly and quarterly Official Statistics which allows health organisations to assess performance and benchmark, identifying outliers and policy developments required. • Provision of transformation funding and National Cancer Programme projects, consisting of more than £250m, is provided to Cancer Alliances based on CWT Official Statistics performance as a benchmark for how ready the local system is to make changes and produce benefits from funding. • National timed pathways which promote best practice for patient care and faster diagnosis of cancer and non-cancer patients have been developed based on performance of tumour groups identified in the Official Statistics. • Local NHS England teams analyse performance and initiate improvement work locally, and identify outliers which have resulted in performance improvement and improved patient care / experience.

Expected Benefits:

Enabling analysis of the Cancer Waiting Times data on a system wide basis will provide insight to focus service improvements on most effective areas to improve performance. In particular you would expect that access to the data be essential to delivery of the Cancer Waiting Times standards:- • 2 week wait urgent GP referral – 93% • 2 week wait breast symptomatic – 93% • 31 day 1st treatment - 96% • 31 day subsequent surgery – 94% • 31 day subsequent drugs – 98% • 31 day subsequent radiotherapy – 94% • 62 day (GP) referral to 1st treatment – 85% • 62 day (screening ) referral to 1st treatment – 90% • 62 day upgrade to 1st treatment – locally agreed standard • 28 day referral to diagnosis - TBC

Outputs:

NHS England use NCWTMDS data on an ongoing basis for performance management purposes and for the production of national and official statistics. Statistical reports are published on a monthly and quarterly basis, and are available via the NHS England website: https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/ Monthly statistical reports are issued alongside a press release to increase impact and aid interpretation. All outputs will contain only data that is compliant with the relevant disclosure control rules including suppression and rounding. Additional outputs consist of: • Analysis to support delivery of Cancer Waiting Times standard and identify variation, including discussions to improve patient pathways and target funding / new NHS England Cancer Programme projects • Comparative Cancer Waiting Times performance at tumour group for Cancer Alliances, Trusts and CCGs • Analysis of Cancer Waiting Times performance by treatment to inform discussions. • Identifying variation which may impact cancer patient’s outcomes or patient experience in order to support national policy discussions

Processing:

This application is for online permissions to access the record level NCWTMDS via the NHS Digital system and iView tool. The system can only be accessed by approved users via an N3 connection. NHS England's national analytics team require access to record level data so that this can be analysed to produce Official Statistics on cancer waiting times. These statistics are published on a monthly and quarterly basis and report the number of people who attended outpatient appointments within two weeks of an urgent referral by their GP for suspected cancer or breast symptoms and, for patients with cancer, on the numbers who started treatment within 31 and 62 days for each organisation. Record level data is required to calculate medians and complete other statistical analysis that cannot be derived from pre-aggregated data alone. NHS England’s Regional analytics teams and Directors of Commissioning Operations analytics teams require access to aggregate record level data so that this can be analysed to produce regional reports on cancer waiting times on a monthly and quarterly basis, which allows them to assess performance and identify regional outliers. Users wishing to access the system will require authorisation from the NHS England SIRO or IAO before access will be granted by NHS Digital; this is managed via a Data Users Certificate (DUC) form that is completed by each organisation accessing the system. NHS England is responsible for ensuring that only individuals with a legitimate need to access the data are approved as users. NHS England users are granted the permission to locally download record level extracts from the system and such downloads must be stored and processed securely on NHS England servers. No patient identifiable data is provided, and records should not be linked to any other source. Data will only be accessed by individuals within NHS England who have authorisation from the SIRO or IAO to access the data for the purposes described, all of whom are personnel working under appropriate supervision on behalf of NHS England. Following completion of the analysis any record level data will be securely destroyed. Users are not permitted to upload data into the system. The data will not be used for commercial use. The data will not be linked with any record level data and there will be no requirement nor attempt to re-identify individuals from the data. The raw data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with appropriate disclosure controls, such as Official Statistics. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).


Project 12 — DARS-NIC-18798-V2J6C

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2017/09 — 2020/07.

Repeats: Ongoing, System Access

Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Outpatients
  • Hospital Episode Statistics Critical Care

Objectives:

NHS England supports across a wide spectrum of responsibilities to support Health and Social care within England access to HDIS is required to support this for the following areas; - commissioning - policy - finance - economic development - research and analysis The above all assist NHS England in its aim to create the culture and conditions for health and care services and staff to deliver the highest standard of care and ensure that valuable public resources are used effectively to get the best outcomes for individuals, communities and society for now and for future generations. Data will only ever be used for purposes relating to healthcare or the promotion of health in line with the requirements of the Health and Social Care Act 2012 as amended by the Care Act 2014. HDIS users are based across the organisation and their access is from the secure NHS England environment. They help NHS England to oversee the delivery of NHS funded services and the continuous improvements to the quality of treatment and care by using HES data to inform, target, strategies, monitor, benchmark, cross-check and plan services. An example is the £2.1 billion Sustainability and Transformation fund set up to stabilise NHS finances, in tandem with higher rates of efficiency growth, and to provide funding for transition to more effective models of care. Many of this fund’s uses impact on hospital care and require good evidence and understanding of hospital activity – at a local level but within a national context as provided by HES. Another example is the redesign of urgent and emergency care (UEC) services to cope with the increasing demand on A&E departments and emergency admissions. A specific part of that is the development of new indicators to monitor UEC effectiveness due in October 2016. Some of this analysis will be for internal management purposes and key outputs will be published in various forms (see examples below). NHS England access to record level data is necessary to devise appropriate aggregations eg of activity relating to diseases or groups of operations, to calculate statistics such as median length of stay, to break down total counts to understand their components and to analyse connected activity such as A&E attendance and emergency admission. Any record level data extracted from the system will not be processed outside of the analytics team. Only registered HDIS users who form the analytics team, will have access to record level data downloaded from the HDIS system. Following completion of the analysis the record level data will be securely destroyed.

Yielded Benefits:

Public examples of earlier work drawing on HES outputs that have benefitted patients and Health communities include: • The route map for Urgent and Emergency Care that includes the piloting of outcome metrics to demonstrate improvements for patients: https://www.england.nhs.uk/wp-content/uploads/2015/11/item5-board-20-11-15.pdf. Without these outcome metrics, there is no measure of success for the initiatives implemented. • Publishing a breach rate for mixed sex accommodation that uses HES data in combination with NHS England data: http://www.england.nhs.uk/statistics/statistical-work-areas/mixed-sex-accommodation/. Without this breach rate there would be no accountability and patients would continue to suffer the problems of mixed sex wards. • Tools helping the NHS (and the public) to review and address variation such as the Diagnostic Atlas of Variation: http://www.rightcare.nhs.uk/index.php/atlas/diagnostics-the-nhs-atlas-of-variation-in-diagnostics-services/. Without these tools, local health communities may invest in services that do not provide maximum benefit for patients. • The latest stages of the NHS cancer strategy that include work on improving diagnostic test capacity (drawing on HES analysis): https://www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf. Without this information, there may be insufficient resource put in place to meet demand for cancer diagnostics, leading to worse outcomes. • The Mental Health Five Year Forward View (MH FYFV) dashboard brings together key data from across mental health services to measure the performance of the NHS in delivering plans and includes metrics based on HES (see https://www.england.nhs.uk/mental-health/taskforce/imp/mh-dashboard/). Without this, there would be no transparency in progress towards putting mental health care on a level footing with physical illness. • The allocation model for children’s mental health is being updated with statistics relating to hospital activity in this area. HES provides evidence to allow allocations to be fair and targeted.

Expected Benefits:

NHS England has an objective to allow everyone to have greater control of their health and wellbeing, support individuals to live longer, healthier lives by the provision of high quality health and care services that are compassionate, inclusive and constantly-improving. The vision for that was set out in the NHS Five Year Forward View, published in 2014. NHS England's effectiveness in achieving this is summarised in their Annual Report: https://www.england.nhs.uk/wp-content/uploads/2016/07/nhse-annual-rep-201516.pdf Public examples of earlier work drawing on HES outputs that have benefitted patients and Health communities include: • The route map for Urgent and Emergency Care that includes the piloting of outcome metrics to demonstrate improvements for patients: https://www.england.nhs.uk/wp-content/uploads/2015/11/item5-board-20-11-15.pdf. Without these outcome metrics, there is no measure of success for the initiatives implemented. • Publishing a breach rate for mixed sex accommodation that uses HES data in combination with NHS England data: http://www.england.nhs.uk/statistics/statistical-work-areas/mixed-sex-accommodation/. Without this breach rate there would be no accountability and patients would continue to suffer the problems of mixed sex wards. • Tools helping the NHS (and the public) to review and address variation such as the Diagnostic Atlas of Variation: http://www.rightcare.nhs.uk/index.php/atlas/diagnostics-the-nhs-atlas-of-variation-in-diagnostics-services/. Without these tools, local health communities may invest in services that do not provide maximum benefit for patients. • The latest stages of the NHS cancer strategy that include work on improving diagnostic test capacity (drawing on HES analysis): https://www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf. Without this information, there may be insufficient resource put in place to meet demand for cancer diagnostics, leading to worse outcomes.

Outputs:

NHS England use HES data on an ongoing basis for management purposes, for internal review, for information and tools to support the commissioning and provision of NHS services and in publications relevant to NHS England business plan and the objectives of NHS England mandate. The following examples illustrate the ongoing use of the HES data and outputs expected in the coming year: • Enumerating activity for specialised commissioning; • Reviewing trends in diagnostic testing to improve early cancer detection; • Validating the claims of New Care Model vanguards to improve eg emergency admission rates and bed days or A&E attendance for children and young people; • Supporting the Maternity Transformation Programme (currently being launched) to deliver safer, more personalised care; • Contributing to the Right Care Commissioning for Value packs to help CCGs do efficient and effective commissioning; • Informing the Congenital Heart Disease Review to secure the best outcomes for patients; • Providing baselines for the CCG Improvement and Assessment Framework for performance monitoring; • Producing hospital related indicators for the Primary Care Dashboard for GP Practices; • Refining the formula for the Mental health tariff; • Developing system wide indicators for Urgent and Emergency Care Networks, to implement from 2017. In addition, NHS England users will analyse HES data to contribute to many other workstreams and handle briefing requests on an ad hoc basis. Each item is separately commissioned and target dates are set during the programme. Examples of external-facing uses of the data are given in the benefits section below. Recent examples of internal and unpublished briefing, tools and analysis are as follows. • Internal analysis paper investigating the appropriate metric for calculating bed-days; • High-level briefing on trends in the use of the independent sector by the NHS; • Dashboard showing variations in endoscopy provision across England; • Briefing paper assessing evidence for the impact of a New Care Models vanguard. The data are used for internal purposes such as briefing and specialised commissioning, for advising NHS organisations such as Trusts and CCGs or for wider publication such as in the examples below. The data are not used for commercial use. Small numbers are suppressed in line with the HES Analysis Guide.

Processing:

NHS England users access HDIS via a secure portal from encrypted laptops and desktops based in a number of locations. These are encrypted by Bitlocker to the AES-256 standard These devices have the VMware software necessary to access HDIS, but not HDIS itself, which remains always in the NHS Digital remote environment. Access is not possible without additionally having a user id, password and RSA token. NHS Digital grant NHS England the ability to carry out analysis on HES data using the SAS Enterprise Guide analytical tool. Data are viewed and analysed remotely via this secure means. NHS England users also have the ability to locally download record level results, outputs and extracts from the HDIS system. Such downloads are stored and processed securely on NHS England servers (or equivalent for Strategic Clinical Network users who are legally part of NHS England). These are generally in the form of tables for further analysis, aggregation, standardisation and computation or for inclusion in briefing, documents, models and tools. Record level extracts are only required for small numbers of cases where further manipulation is required eg to understand how episodes relate to the same spell, pathway or patient. No patient identifiable data are provided and records are not linked to any other source. The data are not used for commercial use. For all outputs small numbers are suppressed in line with the HES Analysis Guide. Any unsuppressed tables are stored and, where necessary, shared securely with colleagues involved in the analysis of results and the unsuppressed data will not be shared with third parties. The data will be processed for the purposes described in this document. Most tables extracted from HDIS are aggregated to CCG, Hospital provider or national level, but further breakdowns may be required eg to build geographies based on Local Authority District or GP practices. HES data may be analysed at aggregate level with other data sources, especially resident or GP registered populations to create activity rates. NHS England have 30 analyst users who are part of the agreed 50 licenses (together with DH, no DH users have access to the HDIS system under the terms of this agreement) that are covered by the GIA arrangement.


Project 13 — DARS-NIC-15336-S8W9K

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2017/09 — 2018/05.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Diagnostic Imaging Dataset

Objectives:

The primary purpose of the flow is for production of Official Statistics, answering Parliamentary Questions (PQs) and media queries, which are the current responsibility of NHS England as subject matter experts. In addition, NHS England will use the data for jointly assessing and addressing data quality problems with HSCIC. Access to pseudonymised record level DID data will also enable NHS England: • To perform better analysis of cancer pathways by indicating where, what and when imaging takes place in the pathway • To allow Public Health England to calculate more accurate estimates of the distribution of individual radiation dose estimates from medical exposures • To enable analysis of demographic and geographic variation in access to diagnostic imaging tests • To provide detailed national data on trends and patterns in NHS imaging to demonstrate how expensive equipment and trained workforce are deployed and support capacity planning • To discontinue the existing annual KH12 dataset and reduce burden on providers • To understand and influence issues around delays in access and turnaround times for tests (including analysis of median periods and distributions) • To provide more detailed national data than is otherwise available on test type (modality), body site of test and patient demographics, which can reveal the impact of initiatives to improve outcomes for patients by influencing the type, timing and number of tests • To allow benchmarking in the rate of provision of diagnostic tests overall and in GPs’ direct access to tests, to encourage increased use of tests leading to earlier diagnosis and hence improved outcomes • To inform accreditation processes for imaging departments through the UK Imaging Services Accreditation Scheme and the assessment of imaging services by the Care Quality Commission. • To inform work on development of accurate tariffs for all diagnostic imaging tests

Expected Benefits:

NHS England will utilise DID data to continuously: • Monitor and improve diagnostic imaging services, by measuring access to imaging services • Improve cancer survival rates by reducing referral to treatment times and diagnosing cancers earlier • Reduce unnecessary exposure to radiation by monitoring compliance with clinical guidelines Benefits achieved to date The reported measures for nine key modalities including X-ray, Ultrasound, CT and MRI scans. This provides more information on NHS provision of these services than any other resource and is the only source of national information on some modalities. The trends and patterns of provision demonstrate where there is scope for improving the early of diagnosis of cancer, in particular highlighting the share of referrals made by GPs.

Outputs:

Aggregated data is produced on a monthly basis, using accumulated annual figures, with small numbers suppressed in line with the HES analysis guide. This is published as an official statistic, conforming to National Statistics protocols on a public website https://www.england.nhs.uk/statistics/statistical-work-areas/diagnostic-imaging-dataset/ In additional to production of the official statistics, NHS England will use the DID data to produce ad-hoc reports and analyses for the purposes outlined in the objective for processing section. All outputs will be aggregated with small numbers suppressed in line with the HES analysis guide. No third party will have access to any record level DID data. Outputs already produced Official statistics from the Diagnostic Imaging Dataset (DID) have been published by NHS England (previously Dept of Health) monthly since 2012-13. In addition, annual reports and additional analyses have been published for 2012-13 to 2014-15. Key statistics include: • Number of diagnostic tests performed • Period from referral to test • Period from test to the test report being issued These measures are reported for nine key modalities including X-ray, Ultrasound, CT and MRI scans. In addition, data are published for a subset of tests that are particularly used to identify or discount a diagnosis of cancer. These statistics are published for England and by Provider on a monthly basis and additionally by Commissioner on an annual basis. They are accompanied by information on data quality, coverage and completeness. Additional annual analyses include: • Annual reports incorporating maps and additional analysis by age, sex, referral source and Provider • Annual technical reports that further explain and describe the data collected • Standardised imaging rates by CCG, showing the variation in provision • Supplementary information on other modalities • A comparison of 2013-14 DID imaging activity with other data sources: DM01 and KH12. In addition to the material published on the NHS England web pages, NHS England produce ad hoc analyses to respond to queries raised by our clinical or policy contacts and others via the contact address did@dh.gsi.gov.uk. Examples of the outputs and associated benefits of these analyses include: • Rates of CT virtual Colonoscopy and Barium enema, which were compared with endoscopy rates (from HES) to show areas of best practice • Cardiac imaging comparisons, showing relative proportions of CT and MRI activity • Analysis by day of the week, to inform the debate around 7-day services • Evaluation with CRUK of ‘Be Clear on Cancer’ initiatives such as for ‘Blood in pee’ and Lung cancer, by demonstrating increased diagnostic activity in periods and areas of the publicity campaigns • Usage of individual NICIP or SNOMED CT codes, to review changes in coding practice • Additional analysis to compare DID waiting times with DM01, to investigate delays around diagnostics • Contributions for consideration or use in the Diagnostic Atlas of Variation published by Rightcare at http://www.rightcare.nhs.uk/index.php/atlas/diagnostics-the-nhs-atlas-of-variation-in-diagnostics-services/ • Data quality analyses, to work together with HSCIC to improve the completeness and usability of DID.

Processing:

NHS England currently hold peudonymised DID data from April 2012 onward . The DID data received within this agreement will be added to the DID data already held by NHS England which is used to create monthly and annual Official Statistics publications. DID data will be provided to NHS England on a monthly basis. Each new months’ data is appended to the existing dataset until all files for a financial year have been published. Data is added to the database on 4th of each month and a report is normally published around the third Thursday of the month. NHS England do not hold any identifiable DID data. NHS England will not link DID data to any other data set. All individuals with access to the record level data are employees of NHS England and no third party will have have access to the record level DID data.


Project 14 — DARS-NIC-139035-X4B7K

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Sensitive, and Non Sensitive

When: 2020/02 — 2020/07.

Repeats: Frequent Adhoc Flow

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Acute-Local Provider Flows
  • Ambulance-Local Provider Flows
  • Assuring Transformation (Pseudo)
  • Children and Young People Health
  • Civil Registration - Deaths
  • Clinical Registries for Commissioning
  • Community Services Data Set
  • Community-Local Provider Flows
  • Demand for Service-Local Provider Flows
  • Diagnostic Imaging Dataset
  • Diagnostic Services-Local Provider Flows
  • Emergency Care-Local Provider Flows
  • Experience, Quality and Outcomes-Local Provider Flows
  • Improving Access to Psychological Therapies Data Set
  • Maternity Services Data Set
  • Mental Health and Learning Disabilities Data Set
  • Mental Health Minimum Data Set
  • Mental Health Services Data Set
  • Mental Health-Local Provider Flows
  • National Cancer Waiting Times Monitoring DataSet (CWT)
  • National Diabetes Audit
  • Other Not Elsewhere Classified (NEC)-Local Provider Flows
  • Patient Reported Outcome Measures
  • Population Data-Local Provider Flows
  • SUS for Commissioners
  • Civil Registration - Births
  • e-Referral Service for Commissioning

Objectives:

NHS England will carry out analysis on a variety of pseudonymised datasets. This collection of datasets has been referred to as the “temporary National Repository” (tNR), and is now known as the National Commissioning Data Repository (NCDR). The requested datasets are required to ensure that NHS England can meet its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N,s23) and to meet the requirements of the Five Year Forward View. The objective for processing can be summarized as the provision of an ad-hoc and routine analysis and reporting service to support the work of NHS England (NHSE) in the following responsibility areas: 1. Proactive management of commissioned services – including contract management, performance management, needs and inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities 2. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities 3. Data quality analysis and data quality management, to ensure data processing has been carried out effectively 4. Advanced analytics to support evaluation of service transformation. In general access to and linkage of the data into NCDR has permitted NHS England to carry out proactive management of commissioned services, which includes contract management, performance management, needs and inequalities analysis, benchmarking, service reviews as well as development, planning, budgets and allocations and general commissioning assurance activities. An example of this is where service reviews in terms of access have taken place and the findings showed that the uptake was low due to location of the service. With the analysis and intelligence gained from using the data, the service has been relocated to a more accessible place. Future access and analysis of the data will confirm the anticipated benefits that the service is reaching and is accessible by more people. Analysis and reporting to support QIPP (Quality, Innovation, Productivity and Prevention) programme activities, have also been supported by developing and using dashboards to support decision making at all levels within NHS England. The dashboards have been a valuable resource of information to demonstrate areas of innovation and improvement and share best practice. Access to the data, has helped drive understanding of Data quality analysis and data quality management. NHS England have been able to identify the gaps of coverage and quality in certain areas; for example, feeding back to NHS Digital of missing data items from the MHSDS data set. Working jointly to understand the issues have helped resolve some of these data concerns, from both commissioner and provider prospectives. To better understand the relationship between physical and mental health, NHS England will link physical and mental health record level data. This is an area where the evidence is currently relatively weak. Linking this data will ensure commissioners can understand full patient pathways for their patients and plan their care, for example NHS England cannot currently answer questions such as whether patients with mental health issues are at a higher risk of particular outcomes (e.g. hospital admissions, re-admissions, increased lengths of stay). It is anticipated that NHS England will develop this resource and request additional datasets from NHS Digital. Any additional datasets will only be included in this agreement subject to application to NHS Digital. The reasons for needing the datasets included in this agreement are as follows: SUS (A&E, OP, APC, and ECDS): SUS data is used extensively in local, regional and national performance management, in the development of national policies (e.g. A&E plan, demand and capacity modelling for elective care) and in resource and activity planning. SUS will also contribute to: 1. Effective performance and contract management of the health and care system 2. Reducing the burden on Local Providers through eventual cessation of daily sitreps (situation report showing patient flow through A&E to help identify and make improvements to systems) which will be replaced by ECDS daily flows Mental Health (MHMDS, MHLDDS, MHSDS) and Assuring Transformation (AT): The 2016 Five Year Forward View for Mental Health report from the Mental Health Taskforce sets out the start of a ten-year journey for the transformation of mental health services. The Mental Health data is crucial in monitoring progress against the Five Year Forward View. MHSDS data has also been expanded to include extensive information on people with learning disability and/or autism. The annual learning disability provider census, which ran from 2013-15 has been stood down, and all relevant content is now included within MHSDS. In addition, the content of the commissioner-based Assuring Transformation (AT) data collection has been included within MHSDS, with a goal to stand down AT when MHSDS data quality and completeness reach acceptable levels. Both the census and AT cover only inpatient care. There is currently no other data set which gives details of specialist community and outpatient services used by people with learning disability and/or autism. This is a high-profile policy area and it is important that NHS England can monitor the quality and completeness of Mental Health data, so that this data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. Access to patient-level data will also allow more detailed modelling and segmentations than is available through published data. NHS England therefore needs to be able to monitor the quality and completeness of Mental Health data, so that the data can become the single, definitive source of information about people with learning disability and/or autism using NHS-funded services. As there is a requirement for further segmentation beyond the existing Data Quality reporting by NHS Digital, patient-level data is required. This is also true for other elements of Mental Health data (e.g. early intervention in psychosis) where NHS England have set-up aggregate data collections from providers until the quality of MHSDS can be improved. This increases burden and causes confusion. Detailed patient-level data is also required to compare Assuring Transformation and MHSDS inpatient data. This is necessary to identify under- and over-reporting in MHSDS (compared to AT) and to identify where patient records are inconsistent across the two data sets. Assuring Transformation is currently being used to monitor inpatient trajectories as part of the three-year national transformation plan ‘Building the right support’. If the monitoring data set switches to MHSDS before the end of this three-year period, NHS England needs to have absolute confidence that the two data sets are comparable and compatible. The need for increased access to Mental Health and IAPT data is widespread given the relative lack of evidence (as compared to measuring physical health), despite £34 billion being spent each year on mental health (source: MH FYFV). The data will allow NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the MH FYFV, such as waiting time standards for early intervention in psychosis. Data access will facilitate the development of new standards e.g. on eating disorders or out of area placements (where patient-level data will allow us to monitor the impact of various thresholds). To monitor progress against policy programmes NHS England need high quality data, and access to Mental Health and IAPT will allow NHS England to assist in driving up quality, and cease the aggregate data collections which are currently in place (so reducing burden on providers and administrative costs). Improving Access to Psychological Therapies (IAPT) (including additional payment data, and wave 1+2 pilot sites): The Improving Access to Psychological Therapies (IAPT) programme began in 2008 and has transformed treatment of adult anxiety disorders and depression in England. Over 900,000 people now access IAPT services each year, and the Five Year Forward View for Mental Health committed to expanding services further alongside improving quality. IAPT services provide evidence based treatments for people with anxiety and depression (implementing NICE guidelines). In addition, there is a strong policy need to understand the linkage between physical and mental health. Physical and mental health are closely linked – people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people – one of the greatest health inequalities in England. Two thirds of these deaths are from avoidable physical illnesses, including heart disease and cancer, many caused by smoking. In addition, people with long term physical illnesses suffer more complications if they also develop mental health problems. To measure the impact of new integrated IAPT services and inform future rollout, NHS England has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS. Additionally, IAPT payment data is requested to aid the testing and implementation of a currency model for IAPT services that is predicated upon the delivery of outcomes and quality metrics related to treatment that are currently captured within the IAPT dataset. Other benefits include enabling the principle of the money following the patient, which is a key enabler of the policy of attaining parity between mental health and physical health. This can only be achieved by an appropriate balance of resources. The Five Year Forward View for Mental Health and Implementing the Five Year Forward View for Mental Health include commitments to expand Improving Access to Psychological Therapies (IAPT) services to meet 25% of need by 2020/21. Most of the expansion will be in ‘Integrated IAPT’ services, co-located in and integrated with physical health services, and focused on people with anxiety/depression in the context of long-term physical health problems and/or people with distressing and persistent medically unexplained symptoms (MUS). The expansion is expected to deliver quality improvements across local health economies that would enable better planning of resources so they are utilised more effectively. To support the development of integrated IAPT services, pilots are being supported as Integrated IAPT Early Implementers in 2016/17 and in 2017/18. Early Implementers will work collaboratively to design and implement high quality new services, and modify clinical pathways. It is anticipated that with a more joined up approach there will be an improvement in access to services for patients who need treatment of co-morbid physical and mental health problems. The aim is to ensure that patients have the access they need as and when required with a more streamlined care pathway. Therapists will be co-located within long term conditions / medically unexplained symptoms (MUS) care pathways as part of multidisciplinary teams. NHS England is supporting Early Implementer pilot sites to deliver new Integrated IAPT services. To understand how Integrated IAPT services can be implemented and their effects, NHS England have commissioned an analysis of the impact of ’Integrated IAPT’ services on health outcomes and healthcare utilisation. The aim of this work is to collect evidence to build a strong case for commissioners to support a further rollout of Integrated IAPT and to understand new ways of working. Analysis of these dimensions will be vital in informing the future roll-out of integrated IAPT services, and the IAPT data included in this agreement is required to carry out this analysis. To measure the impact of new integrated IAPT services and inform future rollout, NHS England has commissioned Imperial College to analyse the impact of Integrated IAPT services. This will include analysis on outcomes and healthcare utilisation, with the aim of collecting evidence to build a strong case for commissioners to support implementation across the NHS. Local 111 Data: 44 lead CCGs already have a contract in place for 111 services and there are currently different models for how 111 services are commissioned and integrated within a locality. By collecting 111 data centrally at a national level, local best practice can be identified through benchmarking and provide the evidence to better understand the most effective model for integration of the various services associated with urgent and emergency care. In order to do this, NHS England requires CCGs to continue to collect data from their local services and provide specific metrics for Urgent & Emergency Care (UEC) so that this is also available in the national UEC Dashboard that North of England Commissioning Support Unit will collate for NHS England nationally. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements). The national UEC Dashboard will enable both CCGs and NHS England to have a consistent way of reviewing UEC services, which will be captured in all CCG DSAs (in addition to this NHS England agreement). It will also provide a consistent method for pathway analysis, so that CCGs can compare and contrast their performance with other UEC models across the country. Linkage through to their own local reporting will further allow them to better understand their local pathways. The proposed approach is the provision of a single national system, white-labelled and provided locally to CCGs. The RAIDR-111 dashboard is a tool specifically developed by NECS to support the UEC system. RAIDR-111 will deliver a single yet comprehensive view of the Integrated Urgent Care system nationally, meeting the needs of many differing audiences – NHSE, STPs, A&E Delivery Boards, and CCGs. The dashboard needs to combine 111 call outcome data with the linked secondary care SUS pseudonymised record level data, showing A&E attendance and treatment received. The dashboard provides a single version of the truth accessible and drillable at national, regional, STP, and CCG level – all able to be aggregated up and down, at the fingertips of the users. These metrics are aggregated (small numbers suppressed in line with NHS Digital requirements). NHS Digital will link the local 111 data with a number of fields from national SUS data in order to generate the dataset required to populate the urgent care dashboard. This linked 111/SUS data set have the consistent pseudonym applied and subsequent upload to the NCDR. This will enable the urgent care dashboard to be populated, which will allow NHS England to understand and benchmark urgent care patient flows and service provision. Further linkage with other NCDR data sets is needed in order to fully understand the activities, pathways and outcomes of patients that enter the system via the 111 service. These data sets will include wider SUS data (APC, OP, A&E), IAPT and the mental health data sets (MHMDS, MHLDDS, MHSDS). South Central & West CSU (SCW) have also been commissioned to undertake work on behalf of NHS England in relation to the 111 data. SCW will utilise the data to assess whether increasing the proportion of 111 calls handled by a clinician reduces the proportion of callers that subsequently attend A&E as well as understanding the impact on ambulance dispositions and GP dispositions. The data will be used to understand the impact on the whole Integrated Emergency Care system of an increase in the resources in the Clinical Assessment Service (CAS) of 111. The data will be used to show any change in disposition of the patients within the 111 system and any impact that it has on the wider system of urgent care service providers. In order for the evaluation to effectively establish the activity, disposition and impact changes SCW will require national data. This will enable changes in services as a result of wider factors (such as demographics, seasonality and national drivers such as the recommendations coming out of the Next Steps on the Five Year Forward View) to be taken into account. Community (CYPHS, CSDS – Community Services Data Set (replacing CYPHS)): NHS England requires access to community data to enable the comparison of outcomes from community healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. NHS England also requires community data to support allocations analysis in order to adhere to statutory duties around allocation of budgets for commissioning NHS services, and in doing so adhering to the principle of ensuring equal access for equal need. Although NHS England has statistical models to predict the need for different health services across the country to inform the allocations process, there is currently no model for community services due to a lack of robust data at the national level. The CYPHS dataset will be undergoing the removal of the age restriction making it an all ages dataset (CSDS). There will also be additional development of this dataset resulting in a new specification. Maternity Services Data Set (MSDS) including currency extract: NHS England requires access to maternity data to enable the comparison of outcomes from maternity healthcare services and ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. This data is required to ensure NHS England can satisfy its statutory responsibility to assure maternity services that are commissioned, changed or redesigned by CCGs and support the development of relevant health and care policies and financial allocations. NHS England also requires national maternity data in order to refresh the allocation formula to inform the next allocations round. Access to maternity patient level data will support the work will enable NHS England to further develop currencies for maternity services. Diagnostic Imaging Dataset (DID): National DID data is required by NHS England to understand the quality of care and patient outcomes. NHS England commission all specialised services activity for two diagnostic tests - PET-CT and Cardiac MRI, and therefore requires access to the relevant data for effective commissioning of these. Furthermore, the dataset provides a more complete picture of all imaging activity including those performed at mobile/independent sector diagnostic units and is therefore more complete than local commissioning flows that are currently received. It will be used alongside other data sources (such as SUS) to undertake specific commissioning activities, including creation of commissioning dashboards, analysis of imaging activity and improving the understanding of diagnostic services by diagnostic modality. NHS England has been granted access to a subset of test DIDs data, which contains over 100 million records. Access to this data facilitated an understanding of the distribution of the time between a test being requested and actually carried out by type of test, provider, by some patient characteristics and over time. This is key to deepening the understanding of what characteristics are associated with the longest delays; particularly with respect to cancer diagnoses, the early detection of which is a key objective in the NHS Long Term Plan. Access to the full dataset on a regular basis will significantly improve understanding of the elective patient pathway from initial outpatient to final treatment. This access will also increase visibility of which parts of the care pathways need improvement where delays often occur (for example), and support improvement programmes which analyse diagnostic waiting times to identify demographic variability of service, inequality in treatment provision and variation in treatment outcomes in relation to length of time between referral and diagnosis. The DID dataset is expected to be completed by all providers of NHS services, and as such covers independent sector providers for PET CT etc. which NHS England’s existing data flows might not cover. It also captures all imaging performed at mobile diagnostic units and therefore is likely to be more complete than current commissioning flows. Release of DID data will allow NHS England to investigate these underlying concerns around coverage and where the gaps are. The DID data would be linked with patient level monitoring received as part of the commissioning process, as well as costing flows such as the local price information, in order to understand the cost of the service. The data would also be linked with SUS. NHS England will be primarily focusing on cardiac MRI and PET CT as these services are commissioned centrally irrespective of whether the patient would traditionally be paid for by CCG or NHS England. Access will also enable line by line reconciliation with patient level flows, following which NHS England could consider turning off the local data flow, in favour of DID, which would release significant burden on trusts. Cancer Waiting times (CWT): NHS England requires access to CWT data so it can be used to monitor times taken to diagnose and treat patients with cancer across the country, and ensuring that wait times are in line with the expectations and rights of patients in the NHS Constitution. The CWT data is also needed to enable the comparison of cancer waiting times from NHS Providers, to understand the scope and scale of variation across the national, regional and sub-regional areas. The data will be used to: • Monitor cancer waiting times targets at national and regional levels. • Identify variances in waiting times across the country and focus on improving the services and reducing inequalities. • Produce monthly and quarterly Official Statistics. • Regional teams and the Commissioning Operations Directorate will use aggregate data for the purpose of performance • management. • investigate these underlying concerns around coverage and where the gaps are. • Review and plan service improvements Comparison of performance by tumour type aggregate reports will provide insight into how adjustments and general operation of the CWT dataset and guidance rules apply in the system, and whether policy decisions need to be made to amend the dataset and rules to reflect changing performance or volumes within CWT. The overall aim of this type of additional analysis would be to support improvements to cancer patients survival and experience. The NHS Long Term Plan set out a number of ambitions to be met by 2028 including increasing the proportions of patients staged 1 or 2 from around half now to three-quarters. Achieving this means that from 2028, 55,000 more people each year will survive their cancer for at least five year after diagnosis. For these, improvements to ensure optimal diagnostic and treatment pathways and nationally agreed processes are key, and require NHS England policy teams to be able to analyse the Cancer Waiting Times dataset to identify improvements. The CWT historical data will required to provide baselines of previous cancer waiting times going back at least 6 years. This will allow retrospective analyses to confirm that interventions put in place to reduce the cancer waiting times, have brought the length of time patients have to wait for a confirmed diagnosis down. Access to data will also identify the quality of the data provided and where focus can be prioritised to support the local healthcare systems. The NHS England requirement for the CWT data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Civil Registration of Deaths and Diagnostic Imaging data. This will be used to understand how local systems are working effectively, such that cancer is diagnosed and treated quicker and cancer survival rates are increasing at a National, Regional and sub-regional level. Civil Registration of Deaths (CR Deaths): Mortality is one of the measures of patient outcomes, particularly when that death is at a young age or from a cause that may have been prevented by a healthcare intervention. There is a Secretary of State ambition to reduce the rate of stillbirths and neonatal deaths by 50% by 2025, for which the maternity transformation programme has been set up to achieve this ambition. To support this ambition there is a requirement to understand the factors that contribute to still births and neonatal deaths. By having access to the Civil Registration of Deaths data, NHS England will be able to understand the drivers and patterns of mortality as well as premature mortality. This would help inform of the NHS treatments that those patients have received. As part of the Long Term Plan, access to this data would also permit analyses that would not be possible from the ONS publications, for example to identify the still birth rate for women from a BAME background who live in the most deprived areas. This would highlight where service provision is not adequate and allow focus and interventions to be put in place with a view to reduce the levels of still births. From access to this data NHS England, would be able to understand reasons why patients are dying at a National, Regional and sub-regional level and identify what additional support services could be put in place to prevent many of these deaths. Part of the analyses would also show where patient are dying e.g. are patients dying at hospitals due to hospices closing due to Local authorities withdrawing support, or is there a problem at a particular trust. NHS England requires the data to feed into the Clinical Pathway dashboard which contain measures: • Mortality rate from serious emergency conditions (7 days) • Mortality rate from serious emergency conditions (30 days) • Case fatality rate from serious emergency conditions These measures help validate programs implemented to improve patient pathway e.g. High users unable to validate if the process to help patients find the best support are working, or did the patient die. The dashboard provides guidance to make Urgent Emergency Care (UEC) systems aware of issues relating to patient outcomes and clinical effectiveness. This will inform long term strategic planning and monitor change to improve the quality of UEC. The NHS England requirement for the CR Deaths data will also need to be used with other datasets included in this Data Sharing Agreement such as SUS, Maternity. This will be used to understand how local systems are working effectively, such that Services and interventions put in place to prevent people from dying early are effective and living longer at a National, Regional and sub-regional level. Patient Reported Outcome Measures (PROMs) NHS England requires access to Patient Reported Outcome Measures data to enable the comparison of outcomes from healthcare services. This data assesses the quality of care delivered to NHS patients from the patient perspective. The data will be used to understand variation and drivers in outcomes as reported by patients, and to explore how they differ in relation to patients undergoing the same set of procedures (hip replacements, knee replacements, groin hernia, varicose veins) within NHS providers. The data will also permit viewing patient outcomes at a National, Regional and sub-regional levels. It will provide NHS England details of the quality of care provided country wide, and focus on where progress can be made to ensure that these services are commissioned in a way that improves the health of the population and reduces inequalities. NHS England will require at least the last 6 years of data to start building the retrospective views of the data, and baseline how patients outcomes have changed historically. PROMs data will also be used alongside a number of fields from the National SUS data in order to develop a dataset that will be used to generate a further analyses and insight that ensures NHS England can satisfy its statutory duties part of which includes a responsibility to consider the economic, social and environmental benefits to be achieved through commissioning. National Diabetes Audit data (NDA): NHS England requires access to the National Diabetes Audit data to; • assess local practice against National Institute for Health and Care Excellence (NICE guidelines • compare care and care outcomes with similar services and organisations • identify gaps or shortfalls that are priorities for improvement • identify and share best practice • provide comprehensive national pictures of diabetes care and outcomes in England NHS England has a statutory duty (under the Health and Social Care Act (2012)) to conduct an annual assessment of every CCG in England. The NDA data will be used to produce the Clinical Commissioning Group Improvement and Assessment Framework (CCGIAF) ratings for indicator 103b. Indicator 103b evaluates newly diagnosed people with diabetes (diagnosed less than a year) attend a structured education course. NHS England monitors the Clinical Commissioning Groups to ensure that the number of diabetes patients attending structured education are increasing. Poor management can be associated with higher risk of the microvascular complications of diabetes (eye disease and blindness; kidney disease and kidney failure; foot disease, foot ulceration and amputation) and higher risk of cardiovascular disease (heart attack, angina, heart failure, stroke, and amputation). As such, NICE recommends that newly diagnosed diabetes patients are attend a structured education course within 12-months of diagnosis in order to improve understanding, empowerment and self-management of diabetes. Whilst diabetes care process delivery and treatment target achievement are recommended in order to both monitor for the onset of diabetes complications and to minimise the risk of onset of diabetes complications, structured education is recommended to support self-management in order to achieve the same goals, as well as to achieve better understanding of the disease and better quality of life with diabetes. The National Diabetes Audit data will also be required to monitor progress on the Transformation Funding provided to the Diabetes programme. The Diabetes Transformation Funding was allocated to CCGs who had successfully bid for funding during 2017/18 to fund four separate workstreams for an initial two-year period as follows: • Increase the treatment target attainment among CCGs and reduce the variation between CCGs to improve outcomes for patients with diabetes and reduce complications • Increase attendance at structured education and thus improve self-management and treatment target attainment • Establish or expand Multi-disciplinary footcare teams to provide a dedicated service improving outcomes, reduce the length of stay and the number of amputations • Implement or increase the Diabetes inpatient specialist nurse provision to provide support and education to inpatients with diabetes to reduce the complications and provide training NHS England will require this data to be fed into a reporting dashboard for the Diabetes Transformation Programme Board, that is to be updated on a regular basis with data from NDA, National SUS, National Diabetes Inpatient Audit data (NaDIA). NHS England will require at least the last 10 years of data to start building the retrospective views of the data, and baseline how delivery of diabetes care has changed historically. Clinical Registry Data: NHS England requires access to data collected within Clinical Registries, Databases and Audits. Part of NHS England’s responsibility oversees the budget, planning, delivery and day-to-day operation of the commissioning side of the NHS in England as set out in the Health and Social Care Act 2012. Every year NHS England recommissions, commissions or procures health services from health service providers. It is a complex process, involving the assessment and understanding of a population’s health needs, the planning of services to meet those needs and securing services on a limited budget, then monitoring the services procured. When a service is procured, this is done through a contract. The contract – is referring t

Yielded Benefits:

NHS England would not have been able to meet some of its statutory duties (as per NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23) and to meet the requirements of the Five Year Forward View, without access to SUS data. Yielded benefits have been partially met with the SUS data. Access has enabled NHS England to check the quality and efficiency of the health services that are commissioned and to plan for the future needs of patients. Reports and dashboards have been created to demonstrate management of commissioned services, including contract management, performance management, inequalities analysis, benchmarking, service review and development, planning, budgets and allocations and general commissioning assurance activities. Access to Mental health and IAPT data has allowed NHS England to better monitor (for example by looking at local variation or the links with physical health) progress against some of the priority actions identified in the Mental Health Five Year Forward View, such as waiting time standards for early intervention in psychosis. NHS England through accessing the data provided, have been able to develop insight and understanding of the services commissioned and ultimately view how this organisation can better support and improve the care and quality patients receive, as well as the ambition set out to help people live longer. There is a continuing requirement for NHS England to have access the data so that all objectives, purposes, outputs and benefits can continue to be realised. For data received only very recently from NHS Digital, including; • Assuring Transformation • Community Services Data Set • Childrens’ and Young Peoples’ Health Services • Maternity Services Data Set – including currency data • Diagnostic Imaging Data set • Improved Access to Psychological Therapy (IAPT) Pilot data The yielded benefits for these data sets cannot to be demonstrated yet, as there has not been enough time to develop understanding of these data sets.

Expected Benefits:

1. Analysis and reporting will help NHS England to commission effective and efficient services in line with NHS England’s Five Year Forward View. 2. NCDR to act as a proving ground for the Commissioner Assignment Methodology (CAM) and to convert the CAM methodology to a system algorithm. Benefits expected from commencement of provider implementation of the CAM include: a. Equitable distribution of resources b. More accurate identification of commissioners c. Improved performance data from providers for monitoring contract performance d. Consistency of approach makes national analyses easier and more accurate e. Efficient local processes for providers 3. Support analysis of development and monitoring outcomes for new models of care. 4. Developing improved methodology for calculation of commissioner budget allocations. 5. Provides robust findings on which complex changes to care are most effective, enabling large transformation programmes to improve the effectiveness of their interventions. For example, SUS data has been used extensively (monitoring trends in acuity of cases, investigating the characteristics of attenders, understanding the relationship between attendances and admissions, etc.) in the development of the recent A&E Plan. 6. Reduced resources whilst delivering robust assessment of national programmes. 7. Supporting Quality Innovation Productivity and Prevention (QIPP) to review demand management, integrated care and pathways. a. Analysis to support full business cases. b. Develop business models. c. Monitor In year projects. 8. Supporting Joint Strategic Needs Assessment (JSNA) for specific disease types. 9. Enables monitoring of: a. Outcome indicators. b. Non-financial validation of activity. c. Successful delivery of integrated care within the NHS. d. Checking frequent or multiple attendances to improve early intervention and avoid admissions. e. Case management. f. Care service planning. g. Commissioning and performance management. h. Understanding the care of patients in nursing homes. 10. There have already been significant benefits realised from the use of activity data derived from SUS. NHS England now share a common understanding of activity levels across the system, which has enabled better local and regional performance management, as well as the development of national policies e.g. new demand and capacity plans for elective care. Better activity data has also enabled a more robust national planning process, and so improved the allocation of funds across the system. Clinical Registry Data: 1. Review the data quality and coverage of the hospitals providing data and provide feedback to improving the collections both in quality and ensuring all provider who should be supplying data are doing so. This will ensure that the care for patients is recorded accurately, which will also have a positive impact on understanding the patients’ care pathway whilst observing potential gaps in care and what interventions can be put in place to further support patient outcomes. Once interventions have been put in place NHS England will be able to monitor the impacts and ensure that the improvements to care and outcomes are being delivered. 2. Clinical Registry data is also required to underpin the strategic planning, purchasing, future models and the evaluation of specialised services for which NHS England also has a national responsibility. The budget for Specialised Commissioning alone is estimated to be £16 Billion (in 2018/2019). From access to the Clinical Registry data NHS England can ensure that payments made to providers are accurate against agreed contract values, avoiding potential overpayments. 3. To support and encourage good standards of quality care, the Clinical Registry data will be used to develop additional policy, guidance and Best Practice Tariffs as top-up payments for Trusts, encouraging better delivery of care. This can be measured by reviewing the number of providers that have met the qualifying criteria, over time.

Outputs:

Any outputs to 3rd parties not included as Data Controller/Processor in this application/agreement must be aggregated (with small number suppression applied in line with NHS Digital requirements). All datasets will be used to: 1. Allow NHS England to meet its ongoing statutory duties under the NHS Act 2006 and the Health and Social Care Act 2012 s13N, s23. Specifically – ‘to exercise its functions ensuring that health services are provided in an integrated way where this would improve quality and outcome of services and reduce inequalities’. 2. Realise data quality improvements initiatives including reports to ensure that NHS England data processing has been carried out correctly (e.g. expected volume of specialised activity service line codes derived). 3. Provide an aggregate activity and finance report which will be used to populate an NHS England integrated activity and finance report for the monthly NHS England Executive Group Meeting. This has now been introduced (the benefits from this, and related SUS analyses included in the following section). 4. Analyse the impact of changes to NHS commissioning business rules (e.g. tariff changes, commissioner assignment, specialised services identification rules, HRG grouping). 5. Facilitate proactive management of NHS England directly commissioned services using pseudonymised or aggregate data (with small number suppression) only. (This is dependent on the analysis requirement as to whether the output used is pseudonymised or aggregate data.) 6. Enhance statistical analysis to facilitate proactive management of transformation programmes by local health systems on behalf of NHS England. 7. Monitor and analyse outpatient and community services; alternatives to inpatient care. 8. Monitor and analyse of new patient care pathways introduced to support the transformation of services for people with learning disability and/or autism. Access to data will specifically allow: - Analysis of inpatient services and activity for people with learning disability and/or autism - Analysis of outpatient and community services and activity for people with learning disability and/or autism - Analysis of patient pathways as patients move between services 9. Analyse factors that result in high service usage. 10. Analyse the usefulness of diagnosis coding. Analysis will firstly focus on an understanding of the completeness and quality of coding in the dataset to provide a basis for any further analysis. NHS England would like to understand the completeness and validity of this data item, as well as identifying any geographical trends or particular providers which show problems with coding completeness. Access to the data would enable further discussion of coding practices in providers for casemix complexity. The intelligence can be shared through commissioning routes to help drive up coding completeness and accuracy to make any subsequent analysis more meaningful. 11. Analyse the spread of diagnoses geographically and demographically, to identify any trends as well as diagnoses recorded over time (given a robust starting point for coding accuracy and completeness). Admissions and readmissions and activity could also be analysed by diagnosis to better understand these trends and potential differences in provider models to inform commissioning decisions and service improvement. 12. Provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. An analysis of restraint to identify any trends or outliers across providers, CCGs and sub-regions. The analysis will also include the frequency of restraint per patient and by ward type. This will highlight any areas for concern in the use of restraint to inform further discussions with commissioners. As the restraint type is added to the MHSDS in v2.0 this will provide further insight and areas for focus in discussions with commissioners. The aim of this is to provide intelligence to commissioners to support the reduction of unnecessary restraint and potentially abusive restraint. 13. Achieve the service improvements required, in association with the findings from the report “The commissioning of specialised services in the NHS” by the National Audit Office (NAO), whereby the findings suggested that NHS England does not have sufficient information to drive service improvement in specialised commissioning. 14. Undertake health economic modelling using: a. Analysis on provider performance against targets. b. Learning from and predicting likely patient pathways for certain conditions, in order to influence early interventions and other treatments for patients. c. Analysis of outcome measures for differential treatments, accounting for the full patient pathway. 15. Provide commissioning cycle support for grouping and re-costing previous activity. 16. Undertake commissioner reporting, including: a. Summary by provider view - plan & actuals year to date (YTD). b. Summary by Patient Outcome Data (POD) view - plan & actuals YTD. c. Summary by provider view - activity & finance variance by POD. d. Planned care by provider view - activity & finance plan & actuals YTD. e. Planned care by POD view - activity plan & actuals YTD. f. Provider reporting. g. Statutory returns. h. Statutory returns - monthly activity return. i. Statutory returns - quarterly activity return. j. Delayed discharges. k. Quality & performance referral to treatment reporting. 17. Produce aggregate reports for CCG Business Intelligence. 18. Produce project / programme level dashboards. 19. Monitor acute / community / mental health quality matrix. 20. Facilitate clinical coding reviews / audits. 21. Undertake budget reporting with drill down capability to various levels. 22. Dashboards that are produced can cover all levels of the NHS – National, Regional and Sub-regional. The aim is to highlight trends of areas where in some cases NHSE are able to the levels of frequency of attendees accessing services. 23. NHS England is creating a population health management dashboard which will give each combined local health economy an aggregated (with small numbers suppressed) view of national data, facilitating benchmarking. This will inform NHS England about the relative performance of these emerging combined health and social care resources, facilitating information exchange and assurance that the new model of operation is being effective and meeting its objectives. 24. Any outputs produced from processing IAPT data must comply with the IAPT Disclosure Controls i.e.: o In order to prevent suppressed numbers from being calculated through differencing other published numbers from totals, all sub-national counts have been rounded to the nearest 5. o Sub-national rates (percentages) are rounded to the nearest whole percent to prevent disclosure. National rates are rounded to one decimal place. Clinical Registry Data: 1. Routine reports and dashboards (where small numbers appear, these will be suppressed in line with NHS Digital guidance) so that all levels of NHS England (national, regional and sub regional) can access the views, analyses and insight. The intelligence gathered will be made available to drive improvement, efficiency as well as recognising ‘model hospital behaviours’ in specialist fields. 2. Produce analysis of variation and trends at National, Regional and Sub regional levels, not just from a provider view, but from a commissioning prospective as well. 3. Produce analysis of variation and drivers in outcomes as reported by each disease specific Registry, and to explore how they differ in relation to patients undergoing the same set of procedures and treatments in NHS providers. 4. Inform decisions of what can be done to reduce the variation and improve the care given to patients. The specific Clinical Registry datasets included in this Data Sharing Agreement at the time of approval are: - TARN, Trauma Audit and Research Network - UK Renal Registry - UK ROC, UK Rehabilitation Outcomes Collaborative - NHFD, National Hip Fracture Database - PICANet, Paediatric Intensive Care Audit Network - BSR, British Spine Registry Other clinical registry datasets may be added to this list, subject to approval from NHS Digital, including review and recommendation by the IGARD (independent expert group advising NHS Digital on the release of data).

Processing:

Data must only be used as stipulated within this Data Sharing Agreement. Data Processors must only act upon specific instructions from the Data Controller. NHS Digital reminds all organisations party to this agreement of the need to comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). No record level data will be linked other than as detailed within this application/agreement. Data will only be shared with those parties listed and will only be used for the purposes laid out in the application/agreement. All access to data (by data controllers and data processors) is managed under Role and task-Based Access Controls. Users can only access data authorised by their role, for a task they are undertaking. Generic processing activities applied to multiple requested data sets Data will only be shared with or processed by the parties listed in this application and will only be used for the purposes stipulated. Any further reports sent beyond the data controller and processors as stipulated in this agreement will contain aggregate data only with small number suppression, and will be subject to the disclosure controls of the relevant datasets. As part of the monitoring and evaluating of the transformation programmes, it will be necessary for the processed data to be enhanced by linking in publicly available contextual information on aggregate level (with small number suppression). Examples of publicly available data include GP patient survey result aggregated to GP practice level (source: https://gp-patient.co.uk/surveys-and-reports), measures of deprivation aggregated at Lower Super Output Area (LSOA) level (a small geographical area typically covering about 1500 people). - source: https://data.gov.uk/dataset/english-indices-of-deprivation-2015-lsoa-level) and disease prevalence, again geographically aggregated (source: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases). The following pseudonymised datasets are provided by NHS Digital to NHS England: - SUS (including ECDS) - Local Provider Flows (including 111 data) - Mental Health Services Data Set (MHSDS) (including pre-publication data) - Mental Health Learning Disability Data Set (MHLDDS) - Mental Health Minimum Data Set (MHMDS) - Assuring Transformation (AT) - Improving Access to Psychological Therapies (IAPT) (including additional payment data and pre-publication data) - Improving Access to Psychological Therapies (IAPT) (including Long term conditions wave 1 and 2 - 22 and 61 providers respectively supplying pilot data) - Children and Young Peoples Health Services (CYPHS) - Community Services Data Set (CSDS) - Maternity Services Data Set (MSDS) (including currency extract) - Diagnostic Imaging Data Set (DID) - Cancer Waiting Times (CWT) - Civil Registration Deaths - Patient Reported Outcome Measures (PROMS) - National Diabetes Audit (NDA) - Clinical Registries for commissioning There are 3 key activities which are undertaken with this data: 1. Data Management (Data Quality, Data Linkage, and creation of data subsets) 2. Analysis within NHS England 3. Analysis outside NHS England Pre-publication data: • Where unpublished management information/ data have been supplied, the following additional ‘conditions of use’ are applicable to reduce the risk of a breach of the Code of Practice for Statistics which may damage the public trust in Official Statistics. Unpublished management information includes data which has been supplied in advance of release of the data as an Official Statistic. o Access to unpublished management information will be kept to a minimum. A record of which groups of people have access to this data should be maintained by the IAO of the NCDR. Unpublished management information will be under separate access to ensure that only those who can access the data prior to publication can do so and that purposes linked to access to the data are recorded. It is expected that access will only be for staff in NHS England Teams and Direct Commissioning (Arden and Greater East Midlands Commissioning Support Unit). o There cannot be any public use of unpublished management information which could undermine the official statistics and thus breach the Code of Practice for Statistics. This includes any public statement that prejudges or pre-empts the contents of any subsequent statistical release, or any ad hoc or selective comments on, or reporting of, unpublished data. o Access to unpublished management information has been granted for managerial, operational, commissioning or other appropriate decision-making purposes. You must not share or discuss the data, or any results or documents based on it, with anyone else or use it for any other purpose. o Unpublished management information may be discussed between other people who have access to the information and with the relevant NHS Digital production team o Any results or documents produced should show that the data are pre-publication restricted. o All users of unpublished management information must abide by these ‘conditions of use’. o Any accidental or wrongful release of the data must be reported immediately to NHS Digital. Wrongful release includes indications of content, including descriptions such as “favourable” or “unfavourable”. If in doubt you should consult the NHS Digital production team in the first instance who can advise. o Any breach in these ‘conditions of use’ may result in removal of access to unpublished management information. 1) Data Management (Data Quality, Data Linkage, and creation of data subsets): This activity is carried out solely by Arden and Greater East Midlands Commissioning Support Unit. The datasets within the NCDR undergo processing to ensure data quality, to meet the reporting requirements, and to add value to the data (e.g. adding a tariff and grouper) to support integrated patient care analysis. In order to be able to link the various datasets, a “Master Patient Index” (MPI) is used. This MPI contains only pseudonymised data, and is created by NHS Digital outside of this agreement (under a Data Processing Agreement) using identifiable data from the NHAIS (GP registration) system. The MPI data can be used to link the pseudonymised datasets, as the same pseudonymisation key is used for the production of all the datasets and the MPI. The MPI also contains demographic data to enhance the analysis, by facilitating segmentation of the population (e.g. by segmenting postcodes and neighbourhoods into 6 Categories, 18 Groups and 62 types). Linkage is only permitted between the datasets listed above. Due to the inherent risks of access to large amounts of data, the MPI is available only to a very small number of people (less than 10). When any MPI data is to be shared outside this small group, the data undergoes a second encryption process using a purpose-specific pseudonym in order to minimise the risk of re-identification. Each request for linkage must be considered by the NCDR Change Advisory Board and authorised by the NCDR IAO before any data is made available to NHS England analysts. Where data is needed for analysis, a purpose-specific data mart (a minimised dataset) is created and is made available only to those analysts demonstrating legitimate purposes and (subject to their use being documented and audited). Risk of re-identification A Privacy Impact Assessment has been undertaken within NHS England in reference to the MPI and risk is within acceptable tolerance levels. Further mitigations have been developed to address increased risk or re-identification through linkage and are being rolled out. These include the assignment of a unique pseudonym for each purpose and a more rigid application of data minimisation. 2) Analysis within NHS England: NHS England may at any time require any of its Commissioning Support Units (CSUs) to undertake activities on its behalf for a specific project(s) under a Service Level Agreement. All NHS CSUs are therefore listed below as data processors: • Arden and Greater East Midlands Commissioning Support Unit (AGEM CSU) • NHS North of England Commissioning Support Unit (NECS) • NHS North & East London Commissioning Support Unit (NEL CSU) • NHS South, Central & West Commissioning Support Unit (SCW CSU) • Midlands and Lancashire Commissioning Support Unit The CSUs undertaking analysis are prohibited from sharing anything other than anonymous data with any 3rd parties. In this instance, “anonymous data” means data that is aggregated (with small numbers suppressed in line with NHS Digital requirements). Processing activities would only take place on pseudonymised patient-level data and would include: • Data quality checks • Data validation • Generation of ad-hoc analysis and reports to support specific projects A lead CSU will be nominated for each project. This approach ensures that NHS England can flexibly meet demand across the NHS system. 3) Analysis outside NHS England: External organisations sometimes provide assistance to NHS England. Each external organisation is included here explicitly, and their data processing is limited to the purpose specified. Any additional organisations or purposes are prohibited. The Health Foundation - The Improvement Analytics Programme The Health Foundation has partnered with NHS England to deliver the Improvement Analytics Unit (IAU), which exists to support all NHS England’s major transformation programmes. The IAU will utilise data to help build a body of knowledge about which interventions and major new initiatives in the English NHS are successfully improving patient care and share that learning more widely. The unit supports delivery of NHS England’s commitment in the Five Year Forward View to evaluating the impact of major national programmes (such as the new care models). The IAU will expand NHS operational research and statistical methods to promote more rigorous ways of answering high impact questions in health services redesign. The Health Foundation will undertake analysis on de-identified patient level data only, which will be provided via NHS England’s contracted data processor for the NCDR. Specifically, it will provide the NHS with the capability of rapidly testing interventions in health and social care system, so that changes can be implemented to the system as rapidly as possible to improve patient care. More widely, the programme supports the development of strong and effective local health systems with the capacity and capability to meet the needs of local communities and to respond to emerging priorities for the NHS. The services agreed with NHS England and The Health Foundation covers in the main, evaluation of the major programmes as set out in the 5 year Forward view and will use a range of approaches to establishing counterfactuals, including through constructing matched controls. This will require development of an Improvement Analytics Unit which provides access to patient level data, and incorporates sophisticated statistical and analytical approaches to the evaluation. The Improvement Analytics Unit is an NHS England initiative which will be run jointly with The Health Foundation during phase 1. An objective of the programme is knowledge transfer of complex statistical techniques from THF to NHS England and their use on the NHS England SAS service. The processing being undertaken will support NHS England to meet its statutory functions outlined in the Health and Social Care Act 2012 covering in the main, direct commissioning and as part of their assurance role (to ensure commissioning is equitable). The Health Foundation (THF) will only be provided with access to or given extracts of the specific commissioning data they require in order to undertake their activities set out within the SLA or data processing agreement. The datasets required for this work are: - SUS (including ECDS) - Mental Health (MHMDS, MHLDDS, and MHSDS) - IAPT - Community (CYPHS, CSDS) - Maternity Processing activities would only take place on patient-level data where it has been pseudonymised and would include: • Data quality checks • Data validation • Generation of ad-hoc analysis and reports to support specific projects Imperial College London – Integrated IAPT Early Implementers Imperial College will only be provided with extracts of the specific commissioning data they require in order to undertake their activities set out within the Data Processing Agreement, The datasets required for this work are: - SUS (including ECDS) - IAPT - IAPT Pilot Imperial College London will use the data to analyse the performance of Integrated IAPT in terms of healthcare utilisation - including recovery, access, demographics, waiting times, as well as patient experience. Data analysis would only take place on pseudonymised patient-level data and would include analysis of IAPT (incl. pilot data) and SUS data and the production of three reports (interim, draft, and final). Data processing activities will include general data quality checks and validation of the pilot data. Imperial will then produce a treated on the treated (TT) analysis - comparing those who were treated in an Integrated IAPT service to those who are as similar as possible but were not treated, looking to find a counterfactual for each treated person, which can reasonably proxy their outcomes had they been treated in terms of secondary health care utilisation. This analysis relies on matched IAPT data with SUS inpatients, outpatients and accident and emergency data. To find a suitable control group for those treated within Integrated IAPT services Imperial will use a matching algorithm with machine learning, which will include a number of SUS variables relating to the individuals visit to hospital (procedure details, diagnosis details etc.) in the matching process, along with their key demographics (age, gender, characteristics of their area of residence including socio-economic status etc.). The second stage of the analysis then relies on standard regression analysis. Having data for 3 years prior to the intervention will ensure there are large enough samples to find appropriate controls for matching with those who have been treated in an Integrated IAPT service. This will allow us to test whether the treated and control sites are statistically similar, in that they show common trends in outcomes before the intervention. It is standard to look at this over a number of years: 3 years is generally the minimum that would be required. In terms of data flowing to both The Health Foundation and Imperial College London, the process is as follows; Data sets approved by NHS Digital are made available through Arden and Greater East Midlands DSCRO. The DSCRO accesses clear patient level data and makes any identifiable data items within non- identifiable. This is done by either removing data items that are not permitted to be seen (e.g. Names, addresses etc), or in the case of patient identifiers, these are pseudonymised in line with NHS Digital guidance. Once the data is pseudonymised, the DSCRO then flows the datasets to NCDR, which is hosted by Arden and Greater East Midlands Commissioning Support Unit (AGEM CSU). At this point NHS England analytical staff are able to access the pseudonymised data within the NCDR, for which they have permission to do so. AGEM CSU (NHS England’s contracted data processor for the NCDR) are able to flow the specified requested data to named organisations (The Health Foundation and Imperial College London) using Secure Electronic File Transfer (SEFT) accounts. This transfer mechanism ensures that data can only be accessed by named individuals (within The Health Foundation or Imperial College London), securely and is also password protected, to enhance security. Clinical Registry Data: There are different sources of the data, dependent on where the clinical registry data is held. The majority of the sources of Clinical Registry data are held within an NHS environment, but not all, for example; UK ROC which is hosted by Kings College London, or TARN data (Trauma Audit Research Network) which is controlled by the University of Manchester. Clinical Registry data is submitted to and collected by NHS Digital under the Data Services for Commissioners Directions 2015. The Directions are published by NHS England in exercise of its powers under Section 254(1) of the Health and Social Care Act 2012 to direct NHS Digital to establish information systems. The rationale for the Directions is to establish Data Services for Commissioners (DSfC): a service to cleanse, link, and de-identify commissioning data, as appropriate; and disseminate the resultant data and reports to commissioners who require them to perform their functions, having current contracts with respective providers, or legitimate interest the data. The NHS England Directions for DSfC provides the legal basis for flow of personal confidential data into NHS Digital. Prior to dissemination to NHS England, all Patient Confidential Data is pseudonymised by NHS Digital (via DSCRO) and the data will flow to NHS England via Arden and Greater East Midlands Commissioning Support Unit who host the NHSE National Commissioning Data Repository (NCDR), in line with the agreed DSfC Anonymisation Specification. Once the data is made available, Data Management (including Data Quality, Data Linkage, and creation of data subsets), is carried out solely by NHS England teams which may include an NHS England Commissioning Support Unit. The Clinical Registry datasets within the NCDR undergo processing to ensure data quality, to meet the reporting requirements, and to add value to the data (e.g. adding a tariff and grouper) to support integrated patient care analysis. Processing activities only take place on pseudonymised patient-level data and include: - Data quality checks - Data validation - Generation of ad-hoc analysis and reports to support specific projects The NHS England NCDR has strict access controls in place and therefore access to the Clinical Registry data held on NHS England’s NCDR is restricted, to ensure that when Clinical Registry data is required, clear justification is provided. All requests are logged and auditable. All users to the NCDR go through an access control process (previously shared with NHS Digital) and purpose specific data sets are created when analysis needs to be undertaken on data held within the NCDR. As previously mentioned, Clinical Registry data will (in some cases not all) also be linked and used alongside a number of fields from other Nationally collected datasets (named above, e.g. SUS), in order to develop subsets that will be project specific and used to generate a further analyses, insight and questions about the health of the population, in terms of why is there variations in the provision of care and what interventions can be developed to improve the inequalities identified. There will be also a need for cross referencing records to ensure that payment is not duplicated, activity is costed appropriately and invoiced correctly by responsible organisations.


Project 15 — CASEMIX_NHSE

Opt outs honoured: No - data flow is not identifiable

Sensitive: Non Sensitive

When: 2016/04 (or before) — 2020/07.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Episode and Spell level grouper results; underlying patient level data.

Objectives:

To inform the decision making process for determination of the scope and structure of the future Grouper Products