NHS Digital Data Release Register - reformatted

Healthcare Quality Improvement Partnership (hqip) projects

6 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

When:DSA runs 2023-03-03 — 2023-06-30 2023.03 — 2023.06.

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.