NHS Digital Data Release Register - reformatted

Healthcare Quality Improvement Partnership (hqip) projects

38 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

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (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 2023-04-13 — 2023-10-12

Access method: One-Off

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

Sublicensing allowed: No

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)

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

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, No (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 2023-03-03 — 2023-06-30 2023.03 — 2024.02.

Access method: One-Off, Ongoing

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

Sublicensing allowed: No

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)

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.