NHS Digital Data Release Register - reformatted

Healthcare Quality Improvement Partnership (hqip) projects

118 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

National Audit of Breast Cancer in Older Patients ( ODR1617_169 ) — DARS-NIC-656784-C7P5B

Opt outs honoured: (Excuses: Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Agency/Public Body)

Sensitive: Sensitive

When:DSA runs 2023-04 – 2023-10

Access method: One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND LONDON (SKIPTON HOUSE)

Sublicensing allowed: No

AGD/predecessor discussions: AGD minutes - 20 April 2023 final.pdf

Datasets:

  1. NDRS Cancer Registrations
  2. NDRS Linked Cancer Waiting Times (Treatments only)
  3. NDRS Linked DIDs
  4. NDRS Linked HES AE
  5. NDRS Linked HES APC
  6. NDRS Linked HES Outpatient
  7. NDRS National Cancer Patient Experience Survey (CPES)
  8. NDRS National Radiotherapy Dataset (RTDS)
  9. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)

Type of data: Anonymised - ICO Code Compliant

Objectives:

The National Audit of Breast Cancer in Older Patients (NABCOP) is a national clinical audit commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of its National Clinical Audit Patient Outcomes Programme. The project began in April 2016 and is a collaboration between the Association of Breast Surgery (ABS) and the Clinical Effectiveness Unit (CEU) of The Royal College of Surgeons of England (RCS). It was commissioned in response to calls for better information about the quality of breast cancer services in England and Wales.

The Audit has evaluated the process of care and outcomes for women aged over 70 years with a histological diagnosis of breast cancer at presentation in secondary care in England and Wales. In particular, the audit covers the care pathway from referral/screening to diagnosis, the elements of care received thereafter (such as surgery, chemotherapy, radiotherapy), and outcomes experienced by patients such as survival time after diagnosis and complication rates after surgery. The patterns are compared with those of women diagnosed in England and Wales with breast cancer aged 50 - 70 years.

NABCOP began work in April 2016 and was funded initially for 3-years. Following the successful delivery of the audit by the RCS during the 3-year contract, the audit contract was extended on another four occasions. The current contract, to complete work for Year 7 of NABCOP, ends on 30 September 2023.

This project will provide information on the comparative performance of breast cancer units in terms of:
• Method of detection and diagnosis
• Staging, frailty assessment and treatment planning
• Sequence of treatments received (neoadjuvant, surgery, adjuvant)
• Outcomes of treatment, including survival and rates of complication

Patient-level data on these aspects of breast cancer care are already routinely collected in hospitals and mandatorily submitted to national organisations. These existing electronic data flows will be used to reduce the burden of data collection on staff and patients. Specifically, this will include utilising data from the Cancer Outcomes and Services Dataset (COSD) and the associated cancer treatment datasets (see below) for English Hospitals. The audit team will also apply for a dataset from the Welsh cancer registration system, Cancer Network Information System Cymru (CaNISC).


Patients with breast cancer typically receive non-surgical treatments in addition to, or instead of, surgery. Information about these treatments is available from the national radiotherapy (RTDS) and chemotherapy (SACT) datasets. Therefore, the NABCOP will use patient-level linkage of Registry/COSD to RTDS and SACT to adequately capture information across the breast cancer care pathway. The linked data will provide information on patient demographics, tumour characteristics and treatments received in secondary care. In addition, linkage to additional data sources is required to understand the outcomes of patients (e.g. complications of treatment, readmissions and death), and consequently, the NABCOP will request Registry/COSD linked to Hospital Episode Statistics (HES) data (admitted care, accident and emergency (A&E) and outpatients), National Cancer Waiting Times Monitoring Data Set (NCWTMDS), Diagnostic Imaging Dataset (DID), NHS Breast Screening Programme (NHSBSP) and Association of Breast Surgery (ABS) audit of screen-detected breast cancers, as well as Office for National Statistics (ONS) Death Register.

Aims

With a linked Registry-COSD-RTDS-SACT-HES-NCWTMDS-DID-NHSBSP/ABS-ONS dataset, the NABCOP will evaluate the patterns of breast cancer care among women aged 70 years and older who are diagnosed with breast cancer in hospitals in England and Wales. The patterns of care observed in this group will be compared with those observed among women diagnosed with breast cancer aged 50-69 years. The processes of care, from the route of referral and diagnosis to the end of primary treatment up to one year after the date of diagnosis, and outcomes of women, will be investigated.


An important aspect of the project will be the consideration of relationships between patient characteristics (e.g. frailty and/or comorbidities) and the sequence and combinations of planned and received therapies.


The Audit will develop a set of process and outcome measures that describe the breast cancer care pathway, and provide information on the comparative performance of Breast Cancer Units related to:

Method of detection and diagnosis.

Staging, frailty assessment and treatment planning.

Sequence of treatments received (neoadjuvant, surgery, adjuvant).


The majority of this development work will be conducted in the first year of the audit and will include indicator definitions as well as determining how these indicators are best presented. To provide comparative information, such as highlighting undesirable variation between providers, it will be necessary for analyses to take account of how planned and received treatments are modified for women who differ in their ability to tolerate specific therapies because they are frail or have comorbidities.


Whether older women with breast cancer receive equitable care compared to younger women is a fundamental part of the design of this Breast Cancer Audit. In addition to age, the audit will examine issues of equity with respect to ethnicity, deprivation and place of residence.


The NABCOP will explore to what extent the use of breast cancer treatment varies across these different patient groups and examine the relationship between outcomes and the different patient groups (age, ethnicity and place of residence). The prospective audit data will be used for this analysis. The COSD already contains the necessary data items: ethnicity and postcode, with deprivation being derived using the Index of Multiple Deprivation derived at the Lower Super Output Area.


The organisational audit will be used to explore to what extent availability of breast cancer services and treatment protocols vary among NHS trusts.

The latest extension request is required to ensure that the study team continue to process data to complete the work currently being undertaken. In order for breast cancer services, patients and policy makers to benefit fully from the potential of the work. The work being undertaken is being used to (1) ensure the lessons from the NABCOP are disseminated widely, and (2) inform the design of the new breast cancer audits. Not approving the extension would mean that the RCS was less able to stimulate NHS services to improve the quality of care for patients with breast cancer.

Yielded Benefits:

As stated in original application. Including: Delivering National Clinical audit report and QI tools since 2016 - https://www.nabcop.org.uk/reports-home/ Contributing to knowledge base and audit development - totaling 12 papers to date - https://www.nabcop.org.uk/publications/?filter_type%5B%5D=journals

Expected Benefits:

The NABCOP will support NHS providers to improve the quality of care for older patients receiving care for breast cancer; by publishing comparative information on the processes and outcomes of care delivered in England and Wales.



The project will be successful when its outputs provide benefits in the following areas:



Implementing change & delivering local quality improvement; encouraging NHS trusts to act on the results of the NABCOP to improve the clinical care delivered to patients. This will be achieved by sharing best practice and recommendations on how Breast Cancer Units and commissioners can address issues identified by the audit related to the management process and outcomes of breast cancer care for older women.

Stimulating and supporting local quality improvement. To support NHS trusts / Health Boards to implement NICE guidance and to provide them with information on whether the recommendations included in the NICE Quality Standards are being followed, particularly in relation to the care received by older women.

Providing opportunities for meaningful international comparisons, including European Society of Breast Cancer Specialists (EUSOMA), European CanCer Organisation (ECCO), European Society for Surgical Oncology (ESSO), International Society of Geriatric Oncology (SIOG), International Benchmarking Project (ICBP).

Making aggregate data available for regulation of providers, such as the CQC and the Wales Cancer Network, by making aggregated data available to regulatory bodies subject to the approval of the Project Board and HQIP and to appropriate data-sharing arrangements. Regulators will be informed about cancer networks and NHS trusts that are detected as potential outliers according to guidance prepared by National Clinical Audit Advisory Group (now called the National Advisory Group on Clinical Audit and Enquires) available on the website of the English Department of Health.

Making data available to the public to help informed choices. The combination of process and outcomes measures provides evidence on the quality of care within NHS units, and will allow the public to make informed decisions about treatments following their breast cancer diagnoses.

Outputs:

The NABCOP will produce various publications targeted to relevant audiences. These include clinical teams delivering care to patients with breast cancer, patient organisations, professional bodies, commissioners at local, regional and national level, the Care Quality Commission and other regulators, and policy makers such as the National Quality Board of the Department of Health.

A key output from the NABCOP will be the annual “state of the nation” report. This will contain comparative results on processes and outcomes of care across England and Wales, and make recommendations on areas for improvement in the care provided by breast cancer units. Results will be published at appropriate levels of aggregation to support quality improvement within hospitals and Trust-level quality assurance activities, such as benchmarking. The results will also be published on the project’s website for easy access by patients and the public, as well as academic peer-reviewed journal papers and conference presentations.

The NABCOP will also work with NCRAS on ensuring that the audit results for NHS trusts can feed into CancerStats. The trusts / Health Boards will also be supported by appropriate tools to facilitate the use of national data for local audit activities. Moreover, the audit will support individual NHS Trusts to produce their Quality Accounts.

The NABCOP will be supported in the production of these outputs by the Association of Breast Surgery, other medical professions and patient representatives on the NABCOP’s Clinical Steering Group. These stakeholders will support both the interpretation of the results and the dissemination of the findings.


As stated in original application. Including:

Publications to date total 12 paper https://www.nabcop.org.uk/publications/?filter_type%5B%5D=journals

Publications submitted or in draft are as follows:

Submitted but outcome TBC:
1. NICE-recommended drugs use in SACT paper
2. PMRT patterns paper
3. Endocrine therapy use in SACT vs PCPD paper

In draft:
4. Trastuzumab for HER2-positive EIBC/LABC – safety
5. Trastuzumab for HER2-positive EIBC/LABC – survival
6. Mastectomy patterns paper
7. Mastectomy survival paper

Processing:

Patients with breast cancer typically receive non-surgical treatments in addition to, or instead of, surgery. Information about these treatments is available from the national radiotherapy (RTDS) and chemotherapy (SACT) datasets. Therefore, the NABCOP will use patient-level linkage of Registry/COSD to RTDS and SACT to adequately capture information across the breast cancer care pathway. The linked data will provide information on patient demographics, tumour characteristics and treatments received in secondary care. In addition, linkage to additional data sources is required to understand the outcomes of patients (e.g. complications of treatment, readmissions and death), and consequently, the NABCOP will request Registry/COSD linked to Hospital Episode Statistics (HES) data (admitted care, accident and emergency (A&E) and outpatients), National Cancer Waiting Times Monitoring Data Set (NCWTMDS), Diagnostic Imaging Dataset (DID), NHS Breast Screening Programme (NHSBSP) and Association of Breast Surgery (ABS) audit of screen-detected breast cancers, as well as Office for National Statistics (ONS) Death Register.

Methods

Study design, setting and participants

The NABCOP will include all women aged 50 years and over, with a diagnosis of breast cancer from 1 January 2014 onwards, until the end of the commissioning contract for providing this audit between the Royal College of Surgeons and the Healthcare Quality Improvement partnership (HQIP), who access secondary care in England or Wales. The target for patient recruitment in the first year of data capture would be 90% of all women aged over 50 years diagnosed with breast cancer, increasing to 95% capture as the audit matures.

Study size

In England, during 2014, 46,085 women were diagnosed with invasive breast cancer [ONS, 2015]. Of these women, approximately 81% were aged 50 years or older (n=37,478) and approximately 35% were aged 70 years or older (n=16,102). A further 6,824 women were diagnosed with carcinoma in situ of breast (ONS, 2015), again with approximately 81% aged 50 years or older (n=5,509) but with only approximately 18% aged 70 years or older (n=1,215). Based on these data from 2014 (the first year that data are requested from), it is expected that the NABCOP’s study sample will include approximately 43,000 patients per year.


Inclusion criteria

-Age 50+ years (no upper age limit)
-Women
-Diagnosed with ICD-10 C50 /D05 between 1 January 2014 and 31 December 2021
-Diagnosed in England or Wales

Exclusion criteria

-Age <50 years
-Men
-Not diagnosed with ICD-10 C50 or D05
-Death Certificate only cases

The study team are looking to continue to retain and process data already provided by NCARDS/NCRAS 2017-2023

National Joint Registry Annual Extract 2020 — DARS-NIC-07289-G8J6C

Opt outs honoured: Yes - patient objections upheld, Yes, No (Excuses: Section 251, Section 251 NHS Act 2006, Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006, Mixture of confidential data flow(s) with support under section 251 NHS Act 2006 and non-confidential data flow(s))

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), Health and Social Care Act 2012 – s261(7), National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 - s261(5)(d); Health and Social Care Act 2012 – s261(2)(c); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No, Yes (Supplier, Commercial, Agency/Public Body)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2020-01 – 2020-12 2017.12 — 2025.07.

Access method: One-Off, Ongoing

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE), HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND - X26

Sublicensing allowed: No, Yes

AGD/predecessor discussions: AGD minutes - 16th January 2025 final.pdf, igard-minutes---9-july-2020-final.pdf, igard-minutes-11th-june-2020-final.pdf, igard-minutes---7th-may-2020-final.pdf, igard_minutes_9_november_20171.pdf, igard_minutes_5_october_2017.pdf, igard_minutes_16.11.17.pdf, IGARDMinutes-11thMarch2021final.pdf, IGARD Minutes - 15th April 2021 final.pdf, igard-minutes---30th-july-2020-final.pdf, IGARD_Minutes_06.04.17.pdf, DAAG_Minutes_10.01.17.pdf

Datasets:

  1. Hospital Episode Statistics Admitted Patient Care
  2. Office for National Statistics Mortality Data
  3. Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics
  4. Patient Reported Outcome Measures (Linkable to HES)
  5. HES:Civil Registration (Deaths) bridge
  6. Civil Registration - Deaths
  7. Civil Registration (Deaths) - Secondary Care Cut
  8. HES-ID to MPS-ID HES Admitted Patient Care
  9. Civil Registrations of Death - Secondary Care Cut
  10. Hospital Episode Statistics Admitted Patient Care (HES APC)
  11. Civil Registrations of Death

Type of data: Identifiable, Anonymised - ICO Code Compliant

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.

Yielded Benefits:

• Identifying a higher than normal failure rate of hip resurfacing procedures in women over the age of fifty, leading to an immediate change in clinical practice. • Identification of the DePuy ASR hip replacement system as an outlier leading to its immediate withdrawal from the market. • The identification of a higher than normal failure rate of large head, metal on metal, stemmed hip replacements. • Research, using NJR and HES data, looking at the risk of cancer following a metal on metal hip replacement compared to other bearing surfaces and the general population.

Expected 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.

National Prostate Cancer Audit (ODR1920_024) — DARS-NIC-656851-D6M5H

Opt outs honoured: No (Excuses: Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Agency/Public Body)

Sensitive: Non-Sensitive, and Sensitive

When:DSA runs 2023-03 – 2023-06 2023.03 — 2024.06.

Access method: One-Off, Ongoing

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

AGD/predecessor discussions: AGD minutes - 7th September 2023 final.pdf

Datasets:

  1. NDRS Cancer Registrations
  2. NDRS Linked HES AE
  3. NDRS Linked HES APC
  4. NDRS Linked HES Outpatient
  5. NDRS National Radiotherapy Dataset (RTDS)
  6. NDRS Rapid Cancer Registrations
  7. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)

Type of data: Anonymised - ICO Code Compliant

Objectives:

The aim of the NPCA is to assess the process of care and its outcomes in men diagnosed with prostate cancer in England and Wales.

The NPCA aims to contribute to changes in clinical practice in England and Wales that will save lives and improve quality of life. Five specific healthcare improvement goals were established in the first term of the audit (1st April 2013 – 30 June 2018):
• Increased use of active surveillance to treat men with low-risk prostate cancer, thus avoiding potential over-treatment.
• Increased use of multimodality therapy (external beam radiotherapy and hormones; combined treatments with surgery and radiotherapy) for men with high risk or locally advanced prostate cancer and thus avoiding potential under-treatment.
• Improved safety and toxicity profile of prostate cancer therapy.
• Reduced variation in prostate cancer management among NHS providers.
• Improved experience of care among men with prostate cancer.

The NPCA determines whether the care received by men diagnosed with prostate cancer in England and Wales is consistent with current recommendations and practice, such as those outlined in the NICE Quality Standards (see below) and provides information to support healthcare providers, commissioners and regulators in helping to improve care for patients.

In the new audit term (from 01.07.19 onwards), the scope of the NPCA will include the development of longer-term outcomes measures including cancer recurrence, progression, and metastatic disease development.

Yielded Benefits:

More specifically, benefits of the Audit can already be seen in the decreasing number of patients considered to be ‘under-treated’ (defined as patients diagnosed with high-risk disease not offered radical therapy) and the decreasing number of patients being ‘over-treated’ (defined as patients diagnosed with low-risk disease undergoing radical treatment). The Audit highlights the proportion of patients diagnosed at the metastatic stage, and further research showed a difference in the population characteristics of these patients, which in turn enables targeted initiatives at these groups, in order to decrease the number of patients diagnosed with late-stage disease and therefore improve their outcomes. The Audit has organised two very well-attended (100+ clinicians, commissioners, patients) Quality Improvement Workshops in 2021 and 2023, for which slides and recordings of the presentation are available on the NPCA website (https://www.npca.org.uk/quality-improvement/). Both workshops stimulated discussions around Audit outputs and research, as well as providing data for local and regional quality improvement activities. Findings from the Audit’s 2022 organisational audit (94% response rate) showed areas where supportive services are available in the majority of trusts (Specialist nurses, continence services and sexual function services) and others where there is variation (genetic counselling and onco-geriatric services). Using this data enables Trusts to assess their service provision and if necessary, to improve it, ultimately benefitting patient care.

Expected Benefits:

The findings of this Audit are expected to contribute to evidence-based decision-making for policy-makers, and local decision-makers such as doctors, and patients to inform best practices to improve the care, treatment and experience of healthcare users with a diagnosis of Prostate Cancer.

Broadly, dissemination of Audit results allows the Audit to provide information to NHS Prostate Cancer Services to benchmark their performance, and where necessary support their quality improvement.

By auditing the care delivered by cancer services, the NPCA highlights areas where NHS hospitals are doing well, and areas in which the quality of care can be improved. The results of the NPCA have the potential to encourage providers to review and act on their results to improve the clinical care delivered to patients, by sharing comparative performance information to allow local benchmarking, highlighting areas of unwarranted variation in practice and/or outcomes. The audit will look to identify best practices and make recommendations on how prostate cancer teams, policymakers and health care commissioners can address issues identified.

If the performance of a provider falls outside a pre-specified defined range it will be flagged as a potential “outlier”. The Clinical Lead will be notified of their potential outlier status and the trust is mandated to investigate the possible causes and to develop an action plan. This ‘outlier’ process will take place each year in parallel with the development of the ‘State of the nation’ report.

In cases where outlier status is confirmed, and clinical practice is identified as contributing to poorer outcomes, the development and implementation of action plans by the NHS Trust to improve practice can have a direct impact on patient care.

It is hoped that through the publication of findings in appropriate media, the findings of the Audit will add to the pool of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to patients with Prostate Cancer.

The NPCA team will aim to disseminate their results and reports widely with the support of their stakeholders including patient charities and professional organisations to ensure maximum engagement with scientific and policy-making communities.

Outputs:

The expected outputs of the processing will be:
• The publication of an Annual ‘State of the Nation’ (SotN) report, including a patient summary of such reports.
• The production of dashboards to aid continuous monitoring of NHS Providers. The dashboards will be updated on a quarterly basis and will be made available on the Audit webpages.
• Submissions to appropriate peer-reviewed journals on an ongoing basis
• Shorter reports on various relevant topics- including a comparison of the ‘Gold Standard’ NDRS Cancer Registration and the Rapid Cancer Registrations data.
• Presentations at appropriate conferences- including the respective annual meetings of BAUS and BUG
• The use of appropriate methods to measure a range of key process and outcome performance indicators, comparing and reporting the performance of NHS providers

The Audit also supports other key national initiatives including the Care Quality Commission (CQC) inspection programme, HQIP’s National Clinical Audit Benchmarking (NCAB), and the Getting It Right First Time (GIRFT) initiative by providing provider-level results.

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Reports published on the Audit webpages
• Social media
• Public reports
• Newsletters (https://www.npca.org.uk/news/)
• Reports aimed at patients (lay summaries)

Outputs will be produced on an ongoing basis until the end of the contract with HQIP.

Processing:

No data will flow to NHS England for the purposes of this Agreement.

NHS England will provide the relevant records from the above-listed datasets. The data will contain no direct identifying data items.

Once received by the RCS CEU, the data will not be transferred to any other location.

The data will be stored on servers at the RCS.

The data will be accessed onsite at RCS's premises, and where appropriate by authorised personnel via remote access. Where remote access is in use the data will always remain on the servers at the RCS, and personnel are prohibited from downloading or copying data to local devices.

The data will not be accessed outside of England at any time.

Access is restricted to employees or agents of RCS CEU who have authorisation from the Audit lead.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The data held and received under this Agreement will not be linked with any other data.

There will be no requirement and no attempt to reidentify individuals when using the data.

Analysts from the RCS CEU will analyse the data for the purposes described above.