NHS Digital Data Release Register - reformatted

Northgate Public Services (uk) Limited

Project 1 — DARS-NIC-07289-G8J6C

Opt outs honoured: Y

Sensitive: Sensitive

When: 2017/12 — 2018/02.

Repeats: One-Off

Legal basis: Section 251 approval is in place for the flow of identifiable data, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)

Categories: Identifiable

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Office for National Statistics Mortality Data
  • Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics
  • Patient Reported Outcome Measures (Linkable to HES)

Benefits:

The NJR is an ongoing clinical audit which started to collect data in April 2003. It has no specific target date for the delivery of benefits: these are provided on an ongoing basis. The main benefits associated with the data requested from NHSD are the ability of the NJR to undertake a broader range and type of analyses, and improved monitoring of clinical, patient, and implant-related outcomes by being able to risk-adjust analyses using additional data. A register, such as the NJR, will only ever collect data such that it can identify potential issues: it may not necessarily be able to determine the cause of those issues. The use of the data provided by NHSD, coupled to other research, enables the NJR to begin the process of identifying the cause of potential issues, e.g does early discharge of patients following joint replacement surgery lead to increases in returns to theatre? The work undertaken by the NJR is published as widely as possible, including internationally. The outputs may lead to changes in clinical practice which are, ultimately, to the benefit of patients. The financial cost savings to the NHS are through a reduction in the need to undertake revision procedures or certain types of primary procedure. The NJR has already had a number of notable successes: It is difficult to accurately measure or quantify the benefits arising out of the work of the NJR, but there is evidence to show that its outputs to lead to changes in clinical practice for the benefit of all stakeholders, including patients, Trusts and hospitals, clinicians, suppliers, and the regulatory authorities such as CQC, NICE, and the MHRA. Whilst patient outcomes continue to improve, the NHS is making potential savings through a reduction in the need to undertake as many revision procedures in the future.

Outputs:

The outputs from the use of the data will vary each year, dependent upon the research and analysis priorities set by the NJR’s Research Committee and NJR’s Editorial Board and agreed by the NJR Steering Committee. a) The main vehicle for publication is the NJR’s Annual Report which is published annually in September. In addition to the Annual Report, a Patient’s Guide to the Annual Report is also published and made available in both hard and electronic copy. The Annual Report and the patients guide can be accessed at http://www.njrreports.org.uk. b) Additional analyses are undertaken throughout the year and these are published either on the NJR website or in relevant, professional medical journals. To date those journals have included The Lancet, the British Medical Journal, and the Journal of Bone and Joint Surgery. The NJR maintains a dedicated research section on its website and details of planned, approved, completed, and published analysis can be found at: http://www.njrcentre.org.uk/njrcentre/Research/ResearchPortfolio/tabid/313/Default.aspx. c) The outcomes of analyses are also disseminated at conferences and meetings of professional societies. These include the British Orthopaedic Association, the British Hip Society, the British Association for Surgery of the Knee, the British Elbow and Shoulder Society, and the British Orthopaedic Foot and Ankle Society. The NJR also holds two regional events per year which are aimed at those hospital staff responsible for collecting the data, providing them with an update on the work of the NJR, including its outputs. d) Some outputs are also published through the NJR’s secure online reporting services. These services include NJR Clinician Feedback and NJR Management Feedback which provide information for clinicians and trust/hospital management respectively. All outputs are aggregated and small numbers suppressed in line with the HES analysis guide

Processing:

a) Data Flows. Data is provided by NHSD to NPS for a defined set of OPCS procedure codes related to hip, knee, shoulder, elbow, and ankle joint replacement surgery. This data includes record level HES in-patient episode data linked to ONS and PROMs data. The data is stored, encrypted, in NPS’ secure data centre. All processing activities take place on the server, not on client PCs/Laptops. The data is subsequently linked to NJR data using patient identifiers, principally the NHS number. Once the linked data set has been created, all patient identifiers are removed to create a pseudonymised data set. The data which is received by the NJR from NHS Digital for the people who have consented "No" to the NJR is destroyed by the NJR once it's identified that they are not able to link them into the registry. This dataset is encrypted and transferred securely to the UoB who then use the data for analyses as directed by the NJR Steering Committee. All reporting is based on the publication of aggregated data with small numbers being supressed in line with the HES analysis guide: no record-level reports are published. The data flows have support under Section 251 of the NHS Act 2006. b) Access to the data. Only three, substantive employees of NPS have access to the data provided by NHSD. Those three individuals work within NPS’ NJR team. That access is for the purposes of linking the data to NJR data and producing an annual, NJR/HES/ONS/PROMs linked dataset. The UoB receive, from NPS, a pseudo-anonymised dataset which is held on a server within the UoB. Based on the requirements of specific analyses, the UoB team will create sub-sets of the data which are for use by the UoB team only. NHSD supplied data is not made available to external researchers or analysts. All individuals requiring access to ONS data are individually identified as part of the application process. c) What will not happen to the data. The team at the UoB have no requirement to identify individuals in the linked dataset nor will any attempt be made to do so. This would, in any instance, require NPS to provide the identifiers necessary to do so. Subsets of linked data which include data supplied by NHSD will not be made available to third parties without the prior agreement of NHSD. All outputs from use of the data will be based on aggregated data and small numbers suppressed in line with the HES analysis guide. d) Justification for the data required. In order to accurately determine the outcomes of joint replacement surgery it is necessary to collect as much data as possible over as long a period as possible. For example, data provided from the NJR to the study into the potential increased risk of cancer associated with metal on metal hip replacement had access to a very large cohort of patient data. The conclusions of the study were diametrically different to a similar study that had been published earlier but had only had access to a small set (by comparison) of local data. In order to ensure as much data as possible is available, national data is required. Deprivation analysis and comparison also requires the collection of national data. It is also necessary for the NJR to collect all available longitudinal data, i.e. all data since the NJR started to collect data in 2003. Although NICE guidance is based on ten year survivorship, it is necessary to look further than ten years when assessing outcomes. Some specific issues may not manifest themselves until some considerable time after implantation. Longitudinal data also enables the NJR to look at changes over time, whether it is changes in patient demographics or comorbidities or the effects of changes in clinical practice. Only data related to patients with specific joint replacement are requested and these include patient identifiers. The identifiers are necessary to link NHSD supplied data to corresponding NJR records and are removed once the linkage is complete. Patient identifiers are not used in, or available for, any analysis of the linked dataset. 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data). No other data processor or storage location can access or share the data, including sub-licencing other than those already noted within the agreement. ONS and PROMS terms and conditions will be adhered to by all persons accessing the data. All data previously supplied to the applicant and held by Northgate Public Services has been destroyed as this did not have patient objections applied due to these not being required at the time that data was disseminated. This application will resupply all historical data with objections applied. The pseudo-anonymised data set derived from previously provided data and held by the University of Bristol may be retained.

Objectives:

The NJR was established in 2002 by the Department of Health following a National Audit Office (NAO) report into the higher than expected failure rate of the 3M hip replacement device. The NAO report concluded that, had a national register of hip replacements been in existence, the failure rate would have been detected earlier. Earlier identification would have meant less patients were affected and the costs of revision surgery for the NHS would have been considerably less. The NJR went live in April 2003. Since its establishment, the responsibility for delivering the NJR has passed to HQIP who are contracted by the Department of Health to deliver the National Clinical Audit and Outcomes Programme (NCAPOP). The NJR is an audit within NCAPOP. HQIP acts as the data controller for the NJR and contracts to two other organisations for the delivery of the programme, both of which are data processors: • Northgate Public Services (NPS) is responsible for the NJR’s data collection and processing activities, including data storage and the provision of stakeholder reporting services. • The University of Bristol (UoB)is also a data processor with responsibilities for statistical analysis and reporting. HQIP, as the data controller, has no access to the record level data. Northgate has access to record level data, including patient identifiers, in order to link the data provided to patient records held by the NJR. The linked dataset is pseudo-anonymised by NPS before it is made available to the statistical analysis team at the UoB. Although the UoB team has access to record level data, it does not have access to patient identifiers. The work undertaken by the NJR is to monitor the outcomes of hip, knee, shoulder, ankle, and elbow joint replacement surgery with regards to the performance of devices, surgical teams, and Trusts and hospitals. The monitoring is necessary to ensure patient safety, improve patient outcomes. The overall purpose of the NJR is summarised in its mission statement: ‘The purpose of the National Joint Registry for England, Wales, Northern Ireland, and the Isle of Man is to collect high quality and relevant data about joint replacement surgery in order to provide an early warning of issues relating to patient safety. In a continuous drive to improve the quality of outcomes and ensure the quality and cost effectiveness of joint replacement surgery, the NJR will monitor and report on outcomes, and support and enable related research.’ The strategic goals of the NJR are as follows: • To monitor in real time the outcomes achieved by brand of prosthesis, hospital and surgeon, and highlight where these fall below an expected performance in order to allow prompt investigation and to support follow-up action. • To inform patients, clinicians, providers and commissioners of healthcare, regulators and implant suppliers of the outcomes achieved in joint replacement surgery. • To evidence variations in outcome achieved across surgical practice in order to inform best practice. • To enhance patient awareness of joint replacement outcomes to better inform patient choice and patients’ quality of experience through engagement with patients and patient organisations. • To support evidence-based purchasing of joint replacement implants for healthcare providers to support quality and cost effectiveness. • To support suppliers in the routine post-market surveillance of implants and provide information to clinicians, patients, hospital management and the regulatory authorities. The NJR has been collecting data since 2002 and is an ongoing audit with no planned end date. The NJR’s Steering Committee reviews the NJR’s mission statement and strategic goals annually to ensure that they remain relevant to existing stakeholder priorities, clinical guidance, and legislation. Data has been supplied to the NJR by NHSD annually from 2006 to 2015. The last data was received in 2015 for data to 31 December 2013. The NJR requires record level data from HES, PROMs and ONS in order to help it achieve some of its strategic goals. The NJR creates of an annual, linked dataset comprising of data from the NJR, HES, Patient Episode Database Wales (PEDW), PROMs (NHS England programme), and the ONS. This dataset is used primarily for the production of the NJR’s Annual Report, its associated analyses, and in some reporting services provided to stakeholders. By linking to HES, PROMs and ONS Mortality data, the NJR is able to enhance the quality and type of analyses that it undertakes. The priorities for NJR analyses and research are set by the NJR’s Research Committee and Editorial Board, both of which report to the NJR Steering Committee. • Linkage to HES data enables the NJR to improve the type and quality of the analyses that it can undertake without having to collect the data itself. Such linkage may be length of stay linked to outcomes or co-morbidities linked to outcomes. The NJR has, for example, published a paper examining the increased risk of cancer to patients who have had hip replacement procedures involving the use of metal on metal bearing surfaces, i.e. the femoral head and the acetabular cup or liner are both made of metal. • By linking to PROMs outcomes analyses will improve as poor performance will be detected even if the primary joint replacement procedure has not been revised. A patient’s view of the outcome of joint replacement is a key indicator to the reporting of outcomes and provides an additional endpoint in addition to revision and death. Linkage to PROMs and analysis at the record level enables the NJR to monitor the performance of hospitals, surgeons, and individual implants. • The NJR is required to publish 90 day mortality rates for all those NHS England Trusts undertaking joint replacement surgery in its Annual Clinical Reports to Trusts, the NJR’s Annual Report and as part of the NHS England Clinical Outcomes Programme. This latter information is also re-published by NHS Choices. Date of death and any associated co-morbidities are essential for outcomes analyses and for risk-adjusting mortality analyses. The data required by the NJR are HES inpatient episodes relating to a defined set of OPCS procedure codes, linked to ONS death data and any pre- or post-operative PROMs data. The data are required to be at the record, i.e. patient, level and to include identifiers so that the data can be linked to data held by the NJR. This application requests the data for the defined cohort for; • Records where there is no corresponding record in the NJR. • Records where a patient has declined consent for the NJR to hold their personal identifiers. Where ‘No’ is recorded for consent, the NJR data entry system prevents a user from entering personal identifiers so these records cannot, in any case, be included in any linkage activity, but are necessary for patient safety purposes. This will enable the NJR to continue to improve its analysis and data quality audits, activities which are expressly intended to improve patient outcomes and patient safety. Data from the Isle of Man and Northern Ireland is sourced from elsewhere and not provided by NHS Digital.


Project 2 — DARS-NIC-321226-T4B8S

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2016/12 — 2018/05.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Admitted Patient Care

Benefits:

By Objective:- 1. Without complete data, the NJR's effectiveness at monitoring performance is significantly reduced and the risks to patients increase. 2. Compliance with the NJR, as a data quality indicator, enables Trust management, surgeons, and patients to assess the NJR's ability to monitor patient outcomes and patient safety, with regards to joint replacement, at a hospital and trust level. 3. Increased compliance leads to improved data quality. If the NJR is unable to report those compliance rates to NHS England, trusts may be financially disadvantaged. This could have an indirect impact on a trust's ability to submit procedure data to the NJR, reducing the NJR's ability to effectively monitor the outcomes of joint replacement surgery and thus leading to a reduction in patient safety. The NJR publishes Trust mortality rates and revision rates. If compliance is high Northgate can be sure of these patient outcome measures. By driving up compliance (and having a measure for it) Northgate are able to give the Trusts a measure of data quality.

Outputs:

By Objective:- 1. Specific Outputs. The Trust Compliance rate are published on the NJR Website and refreshed on a quarterly basis. 2. The Trust receives an Annual Report based on the data from that Trust, including performance outcomes (mortality rates and revision rates). The compliance for the Trust is shown for the previous 3 fiscal years and is a measure of the quality of data submitted to NJR for that Trust. 3. The NJR Centre monitors Trust Compliance in order to ensure the data it receives is fit for purpose.

Processing:

Record level data is processed within Northgate’s ISO27001 compliant data centre. Only measure values, based on aggregate data are presented through a series of internet enabled reports. There is no physical connection between the values on the website and the record level data that is used to produce them. For NJR, the compliance rate is not affected by the issue of small numbers and therefore will not need to be suppressed. For other products, no data linkage occurs between HES and any different datasets and the HES rules on small number suppression are applied throughout. By objective:- 1. HES episodes are counted based on specific OPCS4 codes, Episode Dates and ProcCode3. These counts are compared to NJR Submissions for a Trust. 2. HES episodes are counted based on specific OPCS4 codes, Episode Dates and ProcCode3. These counts are compared to NJR Submissions for a Trust. 3. HES episodes are counted based on specific OPCS4 codes, Episode Dates and ProcCode3. These counts are compared to NJR Submissions for a Trust.

Objectives:

1. Compliance Monitoring - Internal. The number of hip, knee, ankle, elbow, and shoulder joint replacement procedures submitted to HES are compared with the number of procedures submitted to the National Joint Registry (NJR) so that compliance rates with the NJR (a mandatory data collection) can be calculated. The NJR exists to monitor the performance of implants, hospitals, and surgeons with the aim of improving patient outcomes and patient safety. It is important that the data received by the NJR is as complete as possible, and monitoring compliance rates of Trusts is a key indicator of data quality. 2. Compliance Monitoring - External. Again, the count of hip, knee, ankle, elbow. and shoulder replacements in HES are compared, at a Trust level, to those submitted to the NJR in order to calculate Trust compliance rates. This information is reported via Annual Clinical Trust Reports so that Trust senior management can ensure that the completeness of the data submitted to the NJR will enable the NJR to report accurately on the outcomes of joint replacement surgery at a hospital and trust level. The compliance rate is also reported as part of NHS England's Clinical Outcomes Programme and made available via patient-focused websites: www.njrsurgeonhospitalprofile.org.uk and NHS Choices. Compliance with the NJR, as a data quality indicator, enables Trust management, surgeons, and patients to assess the NJR's ability to monitor patient outcomes and patient safety, with regards to joint replacement, at a hospital and trust level. 3. Best Practice Tariff - External Reporting. In order to encourage compliance with the NJR, NHS trusts are offered financial incentives under the Best Practice Tariff programme. These tariffs are intended to improve quality in the NHS by reducing variation in the outcomes of care and to promote best practice. In order to receive those financial rewards, trusts have to meet annually set target rates for compliance for hip and knee joint replacement surgery. The NJR compares the count of procedures in HES to those in the NJR and reports the compliance rates to the Best Practice Tariff team.