National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA)
NHS England · Agency/Public Body
Expired The latest version ended on 31 December 2025. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-454669-H0H4X
- Latest version
- v4.4
- Term of latest version
- 1 January 2025 to 31 December 2025
- Start date
- 7 May 2021
- Data controller
- Joint Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 75
Data controllers
Why the data was released
Objective for processing
The Gastrointestinal Cancer Audit Programme (GICAP) comprises the National Oesophago-Gastric Cancer Audit (NOGCA) and the National Bowel Cancer Audit (NBOCA). This application relates solely to the NOGCA workstream. The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The audit programme has previously been managed under a single data sharing Agreement, but to minimise the risk of data breaches and to utilise the automated Civil Registrations (Deaths) and Demographics products the decision was made to split the overarching agreement into four separate and more specific agreements DARS-NIC-376603-K2J9R (linkage of NBOCA data), DARS-NIC-454669-H0H4X (linkage of NOGCA data), DARS-NIC-423859-V7S0R (unlinked NBOCA and NOGCA quarterly data reports) and DARS-NIC-656842-S5V7V (Linkage of NDRS data for NBOCA and NOGCA).
The National GICAP is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). NHS England and HQIP are the joint data controllers for the GICAP data, as together both organisations determine the purposes and means of processing. The Royal College of Surgeons of England (RCS) Clinical Effectiveness Unit (CEU) are the data processor. The CEU at the RCS will be processing the data under the direction of the data controllers, and only for the purposes described within this agreement.
NHS England is responsible for determining which projects/topics are included in the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is also involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are represented on the HQIP Data access request group which authorises data sharing applications from third parties.
The data held is used for the assessment of performance of services under contract to HQIP.
The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The Audit is based on prospectively collected, patient-level data on adult patients (aged 18 and over) diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia (HGD). It combines these patient records with records from other available national datasets to provide information to NHS trusts, patients, commissioners and other stakeholders on the patterns of care, from diagnosis to the end of the primary treatment pathway (both curative and palliative treatments) and patient outcomes. Apart from supplying a rich description of the care process, audits such as NOGCA aim to minimise the burden of data collection on clinical staff.
To support the delivery of NOGCA, the project team received the below datasets from NHS England's Data Access Request Service (DARS) on an annual basis. There is no other reasonable means to achieve the purpose that is less intrusive to the data subjects. The level of the data is pseudonymised.
- Hospital Episode Statistics Admitted Patient Care (HES APC) - allows the investigation of the hospital-based part of patient's pathway and readmissions among patients with palliative treatment intent.
- Demographics and Civil Registrations (Deaths) - are required to better understand patient outcomes and track overall mortality, which is one of the audit’s key indicators, dictated by NHS England and the Care Quality Commission (CQC). Demographics product is needed to cross-reference the mortality records (numbers) and to trace records of patients exiting NHS.
The data provided also allows the audit to assess the impact of COVID-19 on the outcomes of the NOGCA cohort and how NHS services are recovering post pandemic.
To address the UK GDPR Principle of data minimisation, this request is limited to a cohort of ~99,000 individuals that have been registered in the NOGCA within the last 9 years, in England and Wales. It is crucial that no geographical exclusions are made, otherwise such limitations would compromise the value of the audit itself.
In addition, the cohort is limited to adult patients only (aged 18 and over). Also, only fields that have been deemed necessary for the purpose of this work have been requested.
The request also encompasses the data for patients who were identified in HES as having oesophago-gastric cancer or treatment but who were not registered with the audit. This cross-checking, feeding into the audit’s case ascertainment work, helps with assessing further the representativeness of NOGCA, the extent of possible missing data and any patterns relating to this, e.g., particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
National Data Opt-Outs (NDOs) have been historically applied to the data disseminated under this agreement following support from the Confidentiality Advisory Group (CAG).
The National Data Opt-Out (NDO) enables patients to opt-out from the use of their confidential patient information for research and planning purposes where the data flows rely upon Regulation 5 of the Health Service COPI (Control of Patient Information) Regulations 2002. It is a standard condition of support under Regulation 5 of the COPI Regulations 2002 that patient wishes are respected. In line with the National Data Opt-Out Operational Policy the Confidentiality Advisory Group (CAG) may exceptionally advise the decision-maker that the NDO should not apply to a specific data flow supported under Regulation 5 of the COPI Regulations 2002. In the case of the GICAP, this has been supported. The justification to not apply the NDOs is as below:
The GICAP’s work in detecting statistical outliers for key outcome indicators enables the identification of potential patient safety issues, leading to local improvement activities where necessary. There are many examples – which were submitted to the CAG for their consideration - from across both audits of the impact of outlier reporting on patient safety.
The pseudonymised data received under this Agreement is linked to the pseudonymised NOGCA audit data held by the CEU. This in turn is linked to pseudonymised data assets provided by the National Disease Registration Service (NDRS) under DARS-NIC-656842-S5V7V this includes: NDRS Cancer Registration (inc. data items from the Cancer Outcomes and Services Dataset (COSD)), NDRS Rapid Cancer Registrations, NDRS Linked Cancer Waiting Times, NDRS Linked Diagnostic Imaging Dataset, NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC), NDRS Systemic Anti-Cancer Therapy Dataset (SACT), NDRS National Radiotherapy Dataset (RTDS), NDRS Somatic Molecular Dataset, NDRS National Cancer Patient Experience Survey (CPES), Patient Reported Outcome Measures (PROMs) for Cancer. The requested data is also linked to data provided by other organisations including National Emergency Laparotomy Audit (NELA), Patient Reported Experience Measure (PREMs), Patient Episode Database for Wales (PEDW), the Case Mix Programme (CMP).
HQIP and NHS England requested that a mortality indicator, created from NHS England data, can be onwardly shared with organisations who request it as part of HQIP’s data access request process.
Any data shared for this purpose must be subject to the conditions that the recipient organisation:
i. must not combine it with other datasets which could potentially increase the risk of reidentification for individuals in the dataset;
ii. must not attempt to re-identify individuals in the dataset;
iii. must not onwardly share the dataset;
iv. must use the dataset for a defined purpose;
v. must not publish the data.
Under the terms of this Agreement, HQIP and NHS England are responsible for ensuring compliance with the above conditions and for confirming destruction of the data by the recipient organisation once the data is no longer required for the purpose for which it was shared.
HQIP and NHS England both rely on Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients. The processing meets the conditions of Schedule 1 Part 1 paragraph 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
NHS England rely on Article 9 (2) (h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance. The processing meets the conditions of Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
Processing activities
The following data flows occurred on an annual basis under previous iterations of this agreement. There are no further data flows under this agreement:
1. The Clinical Audits and Registries Management Service (CARMS) team at NHS England sent the cohort of patient identifiers (listed below) to the NHS England data production team.
2. The NHS England data production team linked patient identifiers to HES APC, Civil Registration (Deaths) and Demographics data, covering the last 10 full years of HES data.
3. The NHS England data production team created an additional cohort (for case ascertainment) of oesophago-gastric cancer patients captured in HES, but not included in the supplied NOGCA cohort, using specified diagnosis or treatment codes. This covered the same data period as data provided for the audit cohort.
4. The NHS England data production team removed patient identifiers from the linked data and the case ascertainment supplementary cohort data.
5. The NHS England data production team sent the de-identified data, including pseudonymised identifier (Audit ID) which is unique to each patient in the supplied cohort, or an equivalent generated pseudonymised identifier (Token Person ID) for each patient in the case ascertainment cohort, to the data recipient at the RCS.
Secure data transfers were facilitated through the Secure Electronic File Transfer (SEFT). The use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
To facilitate the linkage of the NOGCA cohort to NHS England data, the CARMS team securely transferred the following identifiers to the NHS England data production team:
- Audit ID
- NHS Number
- date of birth (DOB)
- sex
- postcode
The CARMS team enabled other data linkage activities, not covered by this agreement, to allow NOGCA to fulfil its contracted objectives and deliverables. Those data linkages are as follows:
- CARMS team sent patient identifiers and Audit ID to NHS England’s National Cancer Registration and Analysis Service (NCRAS) team for linkage of cohort data to cancer registrations, chemo- and radiotherapy (SACT, RTDS) and cancer outcomes (COSD) data; the linked data was then pseudonymised and forwarded to the CEU.
- CARMS team sent patient identifiers and Audit ID to Digital Health and Care Wales (DHCW) for linkage of cohort data to Welsh hospital data (Patient Episode Database for Wales, PEDW); the linked data was then pseudonymised, returned to CARMS and then forwarded to the CEU.
- CARMS team sent patient identifiers and Audit ID to NHS England for linkage of cohort data to the Cancer Patient Experience Survey (CPES) data; the linked data was then pseudonymised and forwarded to the CEU.
In each case the data shared was limited to the minimum required to allow data linkage and does not include any other patient characteristics that would undermine the principle of data minimisation and which could increase the risk of reidentification. There will be no requirement and no attempt to reidentify individuals when using the data. The NHS England CARMS team held relevant permissions in place to permit these linkages but are no longer involved in the GICAP Audit. The NHS England CARMS team no longer have involvement in this Audit Programme.
Upon receipt of all the linked, pseudonymised data, the CEU at the RCS analyses audit and other data sets to produce statistical tables for inclusion in the outputs listed in the next section. The CEU does not make record-level information available to any other party. The CEU only use the data for the stated purposes.
At the RCS, the NOGCA data is stored in a secure IT environment and access to the data is only available for approved individuals and security is maintained through the use of passwords and encryption.
Audit data can only be accessed and processed by agents of the RCS CEU and will not be accessed or processed by any other third parties not mentioned in this agreement. All those processing the data have received appropriate training in data protection and confidentiality.
All flows of record-level identifiable data are covered by the section 251 approval continuously supported by the Confidentiality Advisory Group (CAG). CAG application reference number is: ECC 1-06(c)/2011.
The audits use role-based access to the data, which means that only staff involved in the audit work can be granted access to the strictly necessary information.
Expected output
The outputs produced by NOGCA are the deliverables contracted as part of the audit process commissioned by HQIP.
The audit measures the quality of care received by patients with oesophago-gastric (OG) cancer and oesophageal high-grade dysplasia within NHS services in England and Wales. It is designed to evaluate the care pathway followed by patients once they have been diagnosed with either condition, and to answer questions related to the care they receive and their outcomes. The audit also provides national and trust level outcomes on surgical care.
The findings of the audit are published in annual reports, short reports, scientific journal articles and presented at appropriate medical conferences. NHS trust-level outcomes are publicly available on audit web sites, which provides transparency and supports patient choice. In parallel, consultant- and trust-level outcome information are fed back to data providers to ensure the data quality and to reflect back on performance within each hospital. The intended audience for these outputs are people who deliver, receive, commission and regulate OG cancer care. This includes clinicians, healthcare professionals, hospital medical directors and chief executives, audit managers, commissioners, Care Quality Commission, policy makers such as NHS England, patients and the public.
Whilst all reports are written in a patient-friendly language and can be understood by a lay reader, the RCS also release Patient Reports, specifically aimed at non-medical audience. The CEU takes the opportunity to disseminate their reports as widely as possible - as can be seen from the conferences attended to promote annual reports, social media messages and further sharing of audit publications by partnering organisations, such as charities, professional bodies, as well as patient and carer groups.
It is anticipated that the annual reports will be presented at the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS) and the British Society of Gastroenterology (BSG) annual meetings as a minimum and at other events as appropriate.
All reports are published on the NOGCA web site (https://www.nogca.org.uk/reports/) and on the HQIP’s NCAPOP pages (https://www.hqip.org.uk/a-z-of-nca/national-oesophago-gastric-cancer-audit/#.Y06iznbMKUk).
The outputs are reported at national, Cancer Alliance and NHS Trust level. Examples of specific statistical outputs are:
- percentage of patients with curative treatment intent
- risk adjusted 30- and 90-day post-operative mortality
- percentage of adequate lymph node resections
- percentage of positive resection margins
- length of stay
Trusts use the information in the annual reports to assess their care against national standards, clinical guidance and the performance of other trusts. For example, the audit outputs show whether trusts are following national recommendations such as those published by the National Institute of Health and Care Excellence (NICE) and whether there is any variation in the provision of care. Risk-adjusted outcomes such as 90-day post-operative mortality enable the identification of potential outlier trusts, which are notified of their outlier status and will investigate the potential causes (these may be related to data quality issues or clinical practice). In cases where clinical practice is identified as contributing to poorer outcomes, trusts’ review and improvement of practices can have a direct impact on patient care.
Outliers at individual surgeon-level and at trust-level are identified through the analysis undertaken by the CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Some of the Clinical Outcomes Publication (COP) data is published on the professional bodies' websites.
All outputs are aggregated with small numbers suppressed, except when assisting NHS trusts in evaluating the reasons for their outlier status. Record-level data for the relevant trust is then provided back to the trust upon request to CARMS team. The appropriate section 251 approval is in place to allow the fact of death, in relation to the two mortality indicators, to be shared.
Data files for these requests are provided in a secure manner to named individuals holding NHS.net accounts. Use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
Expected measurable benefits
By auditing the care delivered by cancer services, NOGCA can highlight areas where hospitals are doing well, and areas in which the quality of care can be improved. By producing evidence-based information for all NHS services, it allows cancer services to compare themselves with others in England and Wales and share examples of good practice.
Trusts use the outcomes information in the annual reports to assess their care against national standards, clinical guidance and benchmark against the performance of other trusts. For example, the audit outputs show whether trusts are following national recommendations such as those published by NICE and whether there is any variation in the provision of care. Risk-adjusted outcomes such as 90-day post-operative mortality enable the identification of potential outlier trusts, which are notified of their outlier status and will investigate the causes (these may be related to data quality issues or clinical practice). In cases where clinical practice is identified as contributing to poorer outcomes, trusts’ review and improvement of practices can have a direct impact on patient care.
The audit can identify and report on such improvements in the following year's annual report. This provides commissioners and clinicians with a national picture of how patients are being treated, with the aim of reducing variation and driving up standards of care. Practice in trusts and local health boards across England and Wales will be compared against evidence-based standards from the Royal College of Radiologists to identify where current practice does not meet these standards.
The trust-level profiles are publicly available, thus providing transparency and supporting patient choice. In the past, individual consultant-level reports had also been published, but more recently, due to the impact of Covid-19 on NHS services, these results are only used for feeding back to individuals and Trusts they referred to, for quality improvement and assurance purposes. The individual trust profiles are produced based on analysis for the last year which helps trusts/local health boards identify how they are performing against national and regional figures over time.
The OG Cancer audit project team is also working with CQC to implement improvements in data quality and completeness. This is expected to benefit patients because the CQC reviews the quality of care and can intervene where the data highlights poor practices.
The results of the audit are published on an annual basis to ensure that NHS Services have the most up to date information. The analyses provided in the Audit allow NOGCA to provide evidence-based recommendations with the aim to improve the quality of patient care.
The NOGCA Project Team will continue to work with the Patient & Carer panel to produce a patient friendly report to support the annual report publications. The Panel continues to feed back that patients overwhelmingly support the audit and there has been a very positive response to the patient friendly version of the annual report. The patient friendly version of the report allows patients and their carers to better understand care pathways and potential outcomes.
Benefits reported so far
Quality assurance and improvement are among the key objectives of national clinical audits. The NOGCA evaluates the performance of NHS hospitals using quality indicators based on good practice recommendations from national clinical guidelines.
The audit results enable hospitals to benchmark themselves, and they also lead to evidence-based recommendations in the mandatory audit publications: the annual report (which has a state-of-the-Nation perspective) and short reports which focus on specific topics.
The results of the audits also support health services, commissioners, as well as patients and their families by providing information on treatment outcomes and the various care pathways for patients with oesophago-gastric cancers.
Each publication includes several recommendations for improving patient care. Therefore, the sections below are only a small sample of the impact and improvement to the healthcare system and to patients’ outcomes provided by the Gastrointestinal Cancer Audit Programme (GICAP).
1.
The NOGCA collects data on patients with high-grade dysplasia (HGD), a pre-cancerous condition about which information is not included in any other national collections or databases. Therefore, NOGCA provides a unique insight into the quality of care received by patients with this condition and patient outcomes. The data relating to HGD have been collected since 2012 and have used the British Society of Gastroenterology’s guidelines on the diagnosis and management of HGD to formulate quality indicators and provide information for benchmarking and quality improvement by NHS services.
A State-of-the-Nation perspective is provided each year in the NOGCA Annual Report, and these reports have included recommendations for NHS services that focus on ensuring that:
• all patients with high-grade dysplasia are discussed by a specialist multi-disciplinary team (MDT),
• patients with suspected high-grade dysplasia have their diagnosis confirmed by a second pathologist,
• patients are considered for endoscopic treatment (recommended first-line therapy) and services with unusual patterns of care explore why patients are not being offered endoscopic treatment
In the last year's annual report (2021), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased to 93% (compared to 86% two years earlier) and that 88% of patients had their diagnosis confirmed by a second pathologist (an increase from 84%) and 74% of patients had a plan for endoscopic therapy (an increase from 70%).
2.
In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS). This revealed overall rates of tumour-free resection margins that were above the recommended levels and variation in the number of lymph nodes examined as part of the tumour resection procedures. This led the audit to recommend that specialist surgical centres should:
• increase the proportion of patients who have the recommended minimum number of lymph nodes examined,
• review practice to decrease the proportion of patients who have positive surgical resection margins.
Since 2017, there have been improvements in lymph node yield and tumour-free circumferential margin rates among patients undergoing curative surgery for oesophageal cancer. The proportion of patients with 15 or more lymph nodes examined has increased from 81.9% among patients diagnosed in 2015/16 to 89.2% among those diagnosed in 2019/20. The proportion of patients with positive circumferential margins has decreased from 26.3% to 20.3%. Despite improvements nationally, NOGCA has found substantial variation in the way surgical specimens are prepared for histological assessment, which has prompted AUGIS and the Royal College of Pathologists to collaborate on developing recommendations for the standardisation of these methods.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'.; Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death | Anonymised - ICO Code Compliant | Sensitive | Ongoing | Section 251 NHS Act 2006 |
| Civil Registrations of Death - Secondary Care Cut | Anonymised - ICO Code Compliant | Sensitive | Ongoing | Section 251 NHS Act 2006 |
| Demographics | Anonymised - ICO Code Compliant | Sensitive | Ongoing | Section 251 NHS Act 2006 |
| HES-ID to MPS-ID HES Admitted Patient Care | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Section 251 NHS Act 2006 |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Sensitive | Ongoing | Section 251 NHS Act 2006 |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were applied to 40 of the 75 files released under this agreement, across every version. About opt-outs
No files recorded as released under the latest version. 75 were released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 5 versions.
DARS-NIC-454669-H0H4X-v4.4 1 January 2025 to 31 December 2025
- Title
- National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 0
Datasets: Civil Registrations of Death; Civil Registrations of Death - Secondary Care Cut; Demographics; HES-ID to MPS-ID HES Admitted Patient Care; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-454669-H0H4X-v3.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-01-01 | |
| End date | 2025-12-31 |
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.
DARS-NIC-454669-H0H4X-v3.3 1 January 2024 to 31 December 2024
- Title
- National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 0
Datasets: Civil Registrations of Death; Civil Registrations of Death - Secondary Care Cut; Demographics; HES-ID to MPS-ID HES Admitted Patient Care; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-454669-H0H4X-v2.5
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2024-01-01 | |
| End date | 2024-12-31 | |
| Civil Registrations of Death: legal basis | Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Civil Registrations of Death - Secondary Care Cut: legal basis | Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Demographics: legal basis | Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'. |
Objective for processing
[1 paragraph unchanged]
The audit programme has previously been managed under a single data sharing
[18 words unchanged]
Demographics products the decision was made to split the overarching agreement into
three
four
separate and more specific agreements
DARS-NIC-376603-K2J9R (linkage of NBOCA data),
DARS-NIC-454669-H0H4X (linkage of NOGCA data),
DARS-NIC-376603-K2J9R (linkage of NBOCA data), and
DARS-NIC-423859-V7S0R (unlinked NBOCA and NOGCA quarterly data
reports).
reports) and DARS-NIC-656842-S5V7V (Linkage of NDRS data for NBOCA and NOGCA).
[3 paragraphs unchanged]
The data
requested
held
is
to be
used for the assessment of performance of services under contract to HQIP.
[2 paragraphs unchanged]
To support the delivery of NOGCA, the project team received
and will continue to receive
the below datasets from NHS England's Data Access Request Service (DARS) on
[16 words unchanged]
intrusive to the data subjects. The level of the data is pseudonymised.
[9 paragraphs unchanged]
The pseudonymised data
received under this Agreement
is
sent by England
linked
to the
RCS's CEU and it is then linked to
pseudonymised NOGCA audit data held by
the
CEU. This
is,
in
turn,
turn is
linked to
other
pseudonymised
data
assets
(provided
provided
by
other organisations), such as
the
National Disease Registration Service (NDRS) under DARS-NIC-656842-S5V7V this includes: NDRS Cancer Registration (inc. data items from the Cancer Outcomes and Services Dataset (COSD)), NDRS Rapid Cancer Registrations, NDRS Linked Cancer Waiting Times, NDRS Linked Diagnostic Imaging Dataset, NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC), NDRS
Systemic Anti-Cancer Therapy
(SACT) Dataset,
Dataset (SACT), NDRS National
Radiotherapy Dataset (RTDS),
NDRS Somatic Molecular Dataset, NDRS National Cancer Patient Experience Survey (CPES), Patient Reported Outcome Measures (PROMs) for Cancer. The requested data is also linked to data provided by other organisations including National Emergency Laparotomy Audit (NELA), Patient Reported Experience Measure (PREMs),
Patient Episode Database for Wales (PEDW), the
National Cancer Patient Experience Survey (CPES), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
Case Mix Programme (CMP).
HQIP and NHS England
request
requested
that a mortality indicator, created from NHS
Digital
England
data, can be onwardly shared with organisations who request it as part of HQIP’s data access request process.
[10 paragraphs unchanged]
Processing activities
Data flows to for this agreement will be as follows, on an annual basis:
The following data flows occurred on an annual basis under previous iterations of this agreement. There are no further data flows under this agreement:
1. The Clinical Audits and Registries Management Service (CARMS) team at NHS England
to send
sent
the cohort of patient identifiers (listed below) to the NHS England data production team.
2. The NHS England data production team
to link
linked
patient identifiers to HES APC, Civil Registration (Deaths) and Demographics data, covering the last 10 full years of HES data.
3. The NHS England data production team
to create
created
an additional cohort (for case ascertainment) of oesophago-gastric cancer patients captured in HES, but not included in the supplied NOGCA cohort, using specified diagnosis or treatment codes. This
will cover
covered
the same data period as data provided for the audit cohort.
4. The NHS England data production team
to remove
removed
patient identifiers from the linked data and the case ascertainment supplementary cohort data.
5. The NHS England data production team
to send
sent
the de-identified data, including pseudonymised identifier (Audit ID) which is unique to
[18 words unchanged]
in the case ascertainment cohort, to the data recipient at the RCS.
Secure data transfers
are
were
facilitated through the Secure Electronic File Transfer (SEFT). The use of file
[18 words unchanged]
is granted only to those who are necessary to perform specific tasks.
To facilitate the linkage of the NOGCA cohort to NHS England data, the CARMS team
will
securely
transfer
transferred
the following identifiers to the NHS England data production team:
[5 paragraphs unchanged]
The CARMS team
enables
enabled
other data linkage activities, not covered by this agreement, to allow NOGCA to fulfil its contracted objectives and deliverables. Those data linkages are as follows:
- CARMS team
send
sent
patient identifiers and Audit ID to NHS England’s National Cancer Registration and
[13 words unchanged]
and radiotherapy (SACT, RTDS) and cancer outcomes (COSD) data; the linked data
is
was
then pseudonymised and forwarded to the CEU.
- CARMS team
send
sent
patient identifiers and Audit ID to Digital Health and Care Wales (DHCW)
[6 words unchanged]
Welsh hospital data (Patient Episode Database for Wales, PEDW); the linked data
is
was
then pseudonymised, returned to CARMS and then forwarded to the CEU.
- CARMS team
send
sent
patient identifiers and Audit ID to NHS England for linkage of cohort data to the Cancer Patient Experience Survey (CPES) data; the linked data
is
was
then pseudonymised and forwarded to the CEU.
In each case the data shared
is
was
limited to the minimum required to allow data linkage and does not
[29 words unchanged]
to reidentify individuals when using the data. The NHS England CARMS team
have all
held
relevant permissions in place to permit these
linkages.
linkages but are no longer involved in the GICAP Audit. The NHS England CARMS team no longer have involvement in this Audit Programme.
Upon receipt of all the linked, pseudonymised data, the CEU at the RCS
then analyse
analyses
audit and other data sets to produce statistical tables for inclusion in
[17 words unchanged]
other party. The CEU only use the data for the stated purposes.
[1 paragraph unchanged]
Audit data can only be accessed and processed by
substantive employees
agents
of the
data processor
RCS CEU
and will not be accessed or processed by any other third parties
[7 words unchanged]
processing the data have received appropriate training in data protection and confidentiality.
[2 paragraphs unchanged]
Unchanged: Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
The Gastrointestinal Cancer Audit Programme (GICAP) comprises the National Oesophago-Gastric Cancer Audit (NOGCA) and the National Bowel Cancer Audit (NBOCA). This application relates solely to the NOGCA workstream. The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The audit programme has previously been managed under a single data sharing Agreement, but to minimise the risk of data breaches and to utilise the automated Civil Registrations (Deaths) and Demographics products the decision was made to split the overarching agreement into four separate and more specific agreements DARS-NIC-376603-K2J9R (linkage of NBOCA data), DARS-NIC-454669-H0H4X (linkage of NOGCA data), DARS-NIC-423859-V7S0R (unlinked NBOCA and NOGCA quarterly data reports) and DARS-NIC-656842-S5V7V (Linkage of NDRS data for NBOCA and NOGCA).
The National GICAP is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). NHS England and HQIP are the joint data controllers for the GICAP data, as together both organisations determine the purposes and means of processing. The Royal College of Surgeons of England (RCS) Clinical Effectiveness Unit (CEU) are the data processor. The CEU at the RCS will be processing the data under the direction of the data controllers, and only for the purposes described within this agreement.
NHS England is responsible for determining which projects/topics are included in the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is also involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are represented on the HQIP Data access request group which authorises data sharing applications from third parties.
The data held is used for the assessment of performance of services under contract to HQIP.
The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The Audit is based on prospectively collected, patient-level data on adult patients (aged 18 and over) diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia (HGD). It combines these patient records with records from other available national datasets to provide information to NHS trusts, patients, commissioners and other stakeholders on the patterns of care, from diagnosis to the end of the primary treatment pathway (both curative and palliative treatments) and patient outcomes. Apart from supplying a rich description of the care process, audits such as NOGCA aim to minimise the burden of data collection on clinical staff.
To support the delivery of NOGCA, the project team received the below datasets from NHS England's Data Access Request Service (DARS) on an annual basis. There is no other reasonable means to achieve the purpose that is less intrusive to the data subjects. The level of the data is pseudonymised.
- Hospital Episode Statistics Admitted Patient Care (HES APC) - allows the investigation of the hospital-based part of patient's pathway and readmissions among patients with palliative treatment intent.
- Demographics and Civil Registrations (Deaths) - are required to better understand patient outcomes and track overall mortality, which is one of the audit’s key indicators, dictated by NHS England and the Care Quality Commission (CQC). Demographics product is needed to cross-reference the mortality records (numbers) and to trace records of patients exiting NHS.
The data provided also allows the audit to assess the impact of COVID-19 on the outcomes of the NOGCA cohort and how NHS services are recovering post pandemic.
To address the UK GDPR Principle of data minimisation, this request is limited to a cohort of ~99,000 individuals that have been registered in the NOGCA within the last 9 years, in England and Wales. It is crucial that no geographical exclusions are made, otherwise such limitations would compromise the value of the audit itself.
In addition, the cohort is limited to adult patients only (aged 18 and over). Also, only fields that have been deemed necessary for the purpose of this work have been requested.
The request also encompasses the data for patients who were identified in HES as having oesophago-gastric cancer or treatment but who were not registered with the audit. This cross-checking, feeding into the audit’s case ascertainment work, helps with assessing further the representativeness of NOGCA, the extent of possible missing data and any patterns relating to this, e.g., particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
National Data Opt-Outs (NDOs) have been historically applied to the data disseminated under this agreement following support from the Confidentiality Advisory Group (CAG).
The National Data Opt-Out (NDO) enables patients to opt-out from the use of their confidential patient information for research and planning purposes where the data flows rely upon Regulation 5 of the Health Service COPI (Control of Patient Information) Regulations 2002. It is a standard condition of support under Regulation 5 of the COPI Regulations 2002 that patient wishes are respected. In line with the National Data Opt-Out Operational Policy the Confidentiality Advisory Group (CAG) may exceptionally advise the decision-maker that the NDO should not apply to a specific data flow supported under Regulation 5 of the COPI Regulations 2002. In the case of the GICAP, this has been supported. The justification to not apply the NDOs is as below:
The GICAP’s work in detecting statistical outliers for key outcome indicators enables the identification of potential patient safety issues, leading to local improvement activities where necessary. There are many examples – which were submitted to the CAG for their consideration - from across both audits of the impact of outlier reporting on patient safety.
The pseudonymised data received under this Agreement is linked to the pseudonymised NOGCA audit data held by the CEU. This in turn is linked to pseudonymised data assets provided by the National Disease Registration Service (NDRS) under DARS-NIC-656842-S5V7V this includes: NDRS Cancer Registration (inc. data items from the Cancer Outcomes and Services Dataset (COSD)), NDRS Rapid Cancer Registrations, NDRS Linked Cancer Waiting Times, NDRS Linked Diagnostic Imaging Dataset, NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC), NDRS Systemic Anti-Cancer Therapy Dataset (SACT), NDRS National Radiotherapy Dataset (RTDS), NDRS Somatic Molecular Dataset, NDRS National Cancer Patient Experience Survey (CPES), Patient Reported Outcome Measures (PROMs) for Cancer. The requested data is also linked to data provided by other organisations including National Emergency Laparotomy Audit (NELA), Patient Reported Experience Measure (PREMs), Patient Episode Database for Wales (PEDW), the Case Mix Programme (CMP).
HQIP and NHS England requested that a mortality indicator, created from NHS England data, can be onwardly shared with organisations who request it as part of HQIP’s data access request process.
Any data shared for this purpose must be subject to the conditions that the recipient organisation:
i. must not combine it with other datasets which could potentially increase the risk of reidentification for individuals in the dataset;
ii. must not attempt to re-identify individuals in the dataset;
iii. must not onwardly share the dataset;
iv. must use the dataset for a defined purpose;
v. must not publish the data.
Under the terms of this Agreement, HQIP and NHS England are responsible for ensuring compliance with the above conditions and for confirming destruction of the data by the recipient organisation once the data is no longer required for the purpose for which it was shared.
HQIP and NHS England both rely on Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients. The processing meets the conditions of Schedule 1 Part 1 paragraph 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
NHS England rely on Article 9 (2) (h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance. The processing meets the conditions of Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
Expected output
The outputs produced by NOGCA are the deliverables contracted as part of the audit process commissioned by HQIP.
The audit measures the quality of care received by patients with oesophago-gastric (OG) cancer and oesophageal high-grade dysplasia within NHS services in England and Wales. It is designed to evaluate the care pathway followed by patients once they have been diagnosed with either condition, and to answer questions related to the care they receive and their outcomes. The audit also provides national and trust level outcomes on surgical care.
The findings of the audit are published in annual reports, short reports, scientific journal articles and presented at appropriate medical conferences. NHS trust-level outcomes are publicly available on audit web sites, which provides transparency and supports patient choice. In parallel, consultant- and trust-level outcome information are fed back to data providers to ensure the data quality and to reflect back on performance within each hospital. The intended audience for these outputs are people who deliver, receive, commission and regulate OG cancer care. This includes clinicians, healthcare professionals, hospital medical directors and chief executives, audit managers, commissioners, Care Quality Commission, policy makers such as NHS England, patients and the public.
Whilst all reports are written in a patient-friendly language and can be understood by a lay reader, the RCS also release Patient Reports, specifically aimed at non-medical audience. The CEU takes the opportunity to disseminate their reports as widely as possible - as can be seen from the conferences attended to promote annual reports, social media messages and further sharing of audit publications by partnering organisations, such as charities, professional bodies, as well as patient and carer groups.
It is anticipated that the annual reports will be presented at the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS) and the British Society of Gastroenterology (BSG) annual meetings as a minimum and at other events as appropriate.
All reports are published on the NOGCA web site (https://www.nogca.org.uk/reports/) and on the HQIP’s NCAPOP pages (https://www.hqip.org.uk/a-z-of-nca/national-oesophago-gastric-cancer-audit/#.Y06iznbMKUk).
The outputs are reported at national, Cancer Alliance and NHS Trust level. Examples of specific statistical outputs are:
- percentage of patients with curative treatment intent
- risk adjusted 30- and 90-day post-operative mortality
- percentage of adequate lymph node resections
- percentage of positive resection margins
- length of stay
Trusts use the information in the annual reports to assess their care against national standards, clinical guidance and the performance of other trusts. For example, the audit outputs show whether trusts are following national recommendations such as those published by the National Institute of Health and Care Excellence (NICE) and whether there is any variation in the provision of care. Risk-adjusted outcomes such as 90-day post-operative mortality enable the identification of potential outlier trusts, which are notified of their outlier status and will investigate the potential causes (these may be related to data quality issues or clinical practice). In cases where clinical practice is identified as contributing to poorer outcomes, trusts’ review and improvement of practices can have a direct impact on patient care.
Outliers at individual surgeon-level and at trust-level are identified through the analysis undertaken by the CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Some of the Clinical Outcomes Publication (COP) data is published on the professional bodies' websites.
All outputs are aggregated with small numbers suppressed, except when assisting NHS trusts in evaluating the reasons for their outlier status. Record-level data for the relevant trust is then provided back to the trust upon request to CARMS team. The appropriate section 251 approval is in place to allow the fact of death, in relation to the two mortality indicators, to be shared.
Data files for these requests are provided in a secure manner to named individuals holding NHS.net accounts. Use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
Benefits reported
Quality assurance and improvement are among the key objectives of national clinical audits. The NOGCA evaluates the performance of NHS hospitals using quality indicators based on good practice recommendations from national clinical guidelines.
The audit results enable hospitals to benchmark themselves, and they also lead to evidence-based recommendations in the mandatory audit publications: the annual report (which has a state-of-the-Nation perspective) and short reports which focus on specific topics.
The results of the audits also support health services, commissioners, as well as patients and their families by providing information on treatment outcomes and the various care pathways for patients with oesophago-gastric cancers.
Each publication includes several recommendations for improving patient care. Therefore, the sections below are only a small sample of the impact and improvement to the healthcare system and to patients’ outcomes provided by the Gastrointestinal Cancer Audit Programme (GICAP).
1.
The NOGCA collects data on patients with high-grade dysplasia (HGD), a pre-cancerous condition about which information is not included in any other national collections or databases. Therefore, NOGCA provides a unique insight into the quality of care received by patients with this condition and patient outcomes. The data relating to HGD have been collected since 2012 and have used the British Society of Gastroenterology’s guidelines on the diagnosis and management of HGD to formulate quality indicators and provide information for benchmarking and quality improvement by NHS services.
A State-of-the-Nation perspective is provided each year in the NOGCA Annual Report, and these reports have included recommendations for NHS services that focus on ensuring that:
• all patients with high-grade dysplasia are discussed by a specialist multi-disciplinary team (MDT),
• patients with suspected high-grade dysplasia have their diagnosis confirmed by a second pathologist,
• patients are considered for endoscopic treatment (recommended first-line therapy) and services with unusual patterns of care explore why patients are not being offered endoscopic treatment
In the last year's annual report (2021), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased to 93% (compared to 86% two years earlier) and that 88% of patients had their diagnosis confirmed by a second pathologist (an increase from 84%) and 74% of patients had a plan for endoscopic therapy (an increase from 70%).
2.
In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS). This revealed overall rates of tumour-free resection margins that were above the recommended levels and variation in the number of lymph nodes examined as part of the tumour resection procedures. This led the audit to recommend that specialist surgical centres should:
• increase the proportion of patients who have the recommended minimum number of lymph nodes examined,
• review practice to decrease the proportion of patients who have positive surgical resection margins.
Since 2017, there have been improvements in lymph node yield and tumour-free circumferential margin rates among patients undergoing curative surgery for oesophageal cancer. The proportion of patients with 15 or more lymph nodes examined has increased from 81.9% among patients diagnosed in 2015/16 to 89.2% among those diagnosed in 2019/20. The proportion of patients with positive circumferential margins has decreased from 26.3% to 20.3%. Despite improvements nationally, NOGCA has found substantial variation in the way surgical specimens are prepared for histological assessment, which has prompted AUGIS and the Royal College of Pathologists to collaborate on developing recommendations for the standardisation of these methods.
DARS-NIC-454669-H0H4X-v2.5 20 February 2023 to 31 December 2023
- Title
- National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 16
Datasets: Civil Registrations of Death; Civil Registrations of Death - Secondary Care Cut; Demographics; HES-ID to MPS-ID HES Admitted Patient Care; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-454669-H0H4X-v1.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA) | |
| Start date | 2023-02-20 | |
| End date | 2023-12-31 | |
| Civil Registrations of Death: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Civil Registrations of Death: type of data | Anonymised - ICO Code Compliant | |
| Demographics: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Demographics: type of data | Anonymised - ICO Code Compliant | |
| HES-ID to MPS-ID HES Admitted Patient Care: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): type of data | Anonymised - ICO Code Compliant |
Datasets: + Civil Registrations of Death - Secondary Care Cut
Objective for processing
The
Gastro-Intestinal
Gastrointestinal
Cancer Audit Programme (GICAP) comprises
of
the National Oesophago-Gastric Cancer Audit (NOGCA) and
the National Bowel Cancer Audit
(NBOCA)
(NBOCA). This application relates solely to the NOGCA workstream. The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England
and
the National Oesophago-Gastric Cancer Audit (NOGCA).
Wales.
A contract was awarded in early 2018 by Healthcare Quality Improvement Partnership (HQIP) to the Royal College of Surgeons and NHS Digital (the legal entity of the data processor is “HSCIC” who are trading as “NHS Digital”) to deliver the Gastro-Intestinal (GI) Cancer audit for 3 years, until 31st May 2021, this has now been extended to May 2023.
The audit programme has previously been managed under a single data sharing Agreement, but to minimise the risk of data breaches and to utilise the automated Civil Registrations (Deaths) and Demographics products the decision was made to split the overarching agreement into three separate and more specific agreements DARS-NIC-454669-H0H4X (linkage of NOGCA data), DARS-NIC-376603-K2J9R (linkage of NBOCA data), and DARS-NIC-423859-V7S0R (unlinked NBOCA and NOGCA quarterly data reports).
The National
Gastro-Intestinal Cancer Audit Programme
GICAP
is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS
England
England,
as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).
NHS England and HQIP are the joint data controllers for the GICAP data, as together both organisations determine the purposes and means of processing. The Royal College of Surgeons of England (RCS) Clinical Effectiveness Unit (CEU) are the data processor. The CEU at the RCS will be processing the data under the direction of the data controllers, and only for the purposes described within this agreement.
The purposes for processing the data under this Agreement have joint Data Controllership consisting of the Healthcare Quality Improvement Partnership (HQIP) and NHS England. HQIP is commissioned by NHS England to commission and manage the Gastro-Intestinal Cancer Audit Programme (GICAP), NHS England is a controller of the GICAP jointly with HQIP as together both organisations determine the purposes and means of processing.
NHS England is responsible for determining which projects/topics are included in the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is responsible for determining which projects/topics are included as part of the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is also involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are represented on the HQIP Data access request group which authorises data sharing applications from third parties.
NHS England is involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are a representative upon the HQIP Data access request group which authorises data sharing applications from third parties.
The data requested is to be used for the assessment of performance of services under contract to HQIP.
The data requested is to be used for the performance of services under contract to the Healthcare Quality Improvement Partnership (HQIP). All Intellectual Property Rights (IPR) in any guidance, specifications, instructions, toolkits, plans, data, drawings, databases, patents, patterns, models, design, or other material, furnished or made available to NHS Digital as part of this request remains vested solely in HQIP. This IPR is in turn vested to NHS England through HQIP’s headline contract with them.
The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The Clinical Audits and Registries Management Service (CARMS) at NHS Digital, and the Clinical Excellence Unit (CEU) at the Royal College of Surgeons (RCS) will be processing the data under the direction of the data controllers and only for the purposes described within this Agreement.
The Audit is based on prospectively collected, patient-level data on adult patients (aged 18 and over) diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia (HGD). It combines these patient records with records from other available national datasets to provide information to NHS trusts, patients, commissioners and other stakeholders on the patterns of care, from diagnosis to the end of the primary treatment pathway (both curative and palliative treatments) and patient outcomes. Apart from supplying a rich description of the care process, audits such as NOGCA aim to minimise the burden of data collection on clinical staff.
The aim of the Oesophago-Gastric Cancer Audit is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales. The Audit is based on prospectively collected patient level-data on patients diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia
To support the delivery of NOGCA, the project team received and will continue to receive the below datasets from NHS England's Data Access Request Service (DARS) on an annual basis. There is no other reasonable means to achieve the purpose that is less intrusive to the data subjects. The level of the data is pseudonymised.
To support the delivery of NOGCA, the Clinical Audits and Registries Management Service (CARMS) within NHS Digital have received and will continue to receive HES APC, Civil Registration (Deaths) and Demographics data on an annual basis. The applicant is satisfied that there is no other reasonable means for the data processor to achieve the purpose that is less intrusive to the data subjects.
- Hospital Episode Statistics Admitted Patient Care (HES APC) - allows the investigation of the hospital-based part of patient's pathway and readmissions among patients with palliative treatment intent.
• HES APC will allow the investigation of hospital utilisations and readmissions among patients with palliative treatment intent, with a specific focus on volume of care (number of procedures by the individual) and length of stay
- Demographics and Civil Registrations (Deaths) - are required to better understand patient outcomes and track overall mortality, which is one of the audit’s key indicators, dictated by NHS England and the Care Quality Commission (CQC). Demographics product is needed to cross-reference the mortality records (numbers) and to trace records of patients exiting NHS.
• Demographics and Civil Registrations are requested to measure the performance of trusts and surgeons on the following measures: 30-day post-operative mortality and 90-day post-operative mortality.
The data provided also allows the audit to assess the impact of COVID-19 on the outcomes of the NOGCA cohort and how NHS services are recovering post pandemic.
• The data received will also allow the Audit to assess the impact of COVID-19 on hospital care and outcomes for NOGCA cohort members.
To address the UK GDPR Principle of data minimisation, this request is limited to a cohort of ~99,000 individuals that have been registered in the NOGCA within the last 9 years, in England and Wales. It is crucial that no geographical exclusions are made, otherwise such limitations would compromise the value of the audit itself.
•The Audit wish to receive provisional ('M13') data where this is available to support the timely delivery of the NOGCA annual reports.
In addition, the cohort is limited to adult patients only (aged 18 and over). Also, only fields that have been deemed necessary for the purpose of this work have been requested.
To address the GDPR Principle of Data Minimisation this request is limited to a cohort of ~85,000 individuals that make up the NOGCA cohort. In addition, only data fields that have been deemed necessary for the purpose of this work have been requested.
The request also encompasses the data for patients who were identified in HES as having oesophago-gastric cancer or treatment but who were not registered with the audit. This cross-checking, feeding into the audit’s case ascertainment work, helps with assessing further the representativeness of NOGCA, the extent of possible missing data and any patterns relating to this, e.g., particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
The OG Cancer audit has been continuous since 2006. Data is retained from that time up to the present. Retention of the data is essential to answering queries about previously published reports, although each audit only uses the five most recent years of data for reporting.
National Data Opt-Outs (NDOs) have been historically applied to the data disseminated under this agreement following support from the Confidentiality Advisory Group (CAG).
The data received from the Data Access Request Service (DARS, NHS Digital) is sent to CEU via CARMS to be linked to NOGCA audit data held by CEU. This is in turn linked to the Systemic Anti-Cancer Therapy (SACT) Dataset, Radiotherapy Dataset (RTDS), Patient Episodes Database for Wales (PEDW), the Case Mix Programme (CMP), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
The National Data Opt-Out (NDO) enables patients to opt-out from the use of their confidential patient information for research and planning purposes where the data flows rely upon Regulation 5 of the Health Service COPI (Control of Patient Information) Regulations 2002. It is a standard condition of support under Regulation 5 of the COPI Regulations 2002 that patient wishes are respected. In line with the National Data Opt-Out Operational Policy the Confidentiality Advisory Group (CAG) may exceptionally advise the decision-maker that the NDO should not apply to a specific data flow supported under Regulation 5 of the COPI Regulations 2002. In the case of the GICAP, this has been supported. The justification to not apply the NDOs is as below:
• SACT: The SACT data covers patients receiving cancer chemotherapy in, or funded by, the NHS in England. This data is collected by the National Cancer Registration and Analysis Service (NCRAS) within Public Health England (PHE) and can be requested via the Office for Data Release (ODR). Linkage will allow a more in-depth analysis of specific chemotherapy regimens and changes to prescribed treatments.
The GICAP’s work in detecting statistical outliers for key outcome indicators enables the identification of potential patient safety issues, leading to local improvement activities where necessary. There are many examples – which were submitted to the CAG for their consideration - from across both audits of the impact of outlier reporting on patient safety.
• RTDS: The RTDS hold information on every patient treated with Radiotherapy in the National Health Service in the UK. This data is collected by the NCRAS within Public Health England (PHE) and can be requested via the ODR. The linkage will allow the audit to explore whether the radiotherapy data items in the Audit could be dropped to ease the burden of data collection.
The pseudonymised data is sent by England to the RCS's CEU and it is then linked to pseudonymised NOGCA audit data held by CEU. This is, in turn, linked to other pseudonymised assets (provided by other organisations), such as the Systemic Anti-Cancer Therapy (SACT) Dataset, Radiotherapy Dataset (RTDS), Patient Episode Database for Wales (PEDW), the National Cancer Patient Experience Survey (CPES), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
• PEDW: PEDW records all episodes of inpatient and day case activity in NHS Wales Hospitals. This is inclusive of planned and emergency admissions and minor and major operations. Hospital activity for Welsh residents treated in English Hospitals is also included. This data is collected by NHS Wales Informatics Service (NWIS), from whom this data can be requested.
HQIP and NHS England request that a mortality indicator, created from NHS Digital data, can be onwardly shared with organisations who request it as part of HQIP’s data access request process.
• CMP: The CMP is hosted by the Intensive Care National Audit and Research Centre (ICNARC), from whom the CMP data can be requested. CMP is an audit of patient’s outcomes from adult, general critical care units (intensive care and combined intensive care/high dependency units) covering England, Wales, and Northern Ireland. Linkage will allow reporting patterns of care and outcomes while patients were admitted to critical care and the characteristics of the patients admitted to critical care.
Any data shared for this purpose must be subject to the conditions that the recipient organisation:
• COSD: When linked to NOGCA data, the COSD linkage will enable GICAP to further determine the pathway of care for patients with advanced disease and to describe in further detail the management and outcomes of patients with GI cancer. This data is collected by NCRAS within PHE and can be requested via ODR.
i. must not combine it with other datasets which could potentially increase the risk of reidentification for individuals in the dataset;
• Cancer Registration: This linkage will supplement the cases that are recorded in COSD, as Cancer Registration services undertake active case finding and will pick up cases of oesophago-gastric cancer that have not been entered into the audits. This will help to further assess the representativeness of patients captured in NOGCA It is intended to use the data to assess the extent of possible missing data and any patterns relating to this, e.g., geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
ii. must not attempt to re-identify individuals in the dataset;
HQIP and NHS England both rely on the Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
iii. must not onwardly share the dataset;
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.
iv. must use the dataset for a defined purpose;
NHS England rely on Article 9(2)(h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance.
v. must not publish the data.
Under the terms of this Agreement, HQIP and NHS England are responsible for ensuring compliance with the above conditions and for confirming destruction of the data by the recipient organisation once the data is no longer required for the purpose for which it was shared.
HQIP and NHS England both rely on Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients. The processing meets the conditions of Schedule 1 Part 1 paragraph 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
NHS England rely on Article 9 (2) (h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance. The processing meets the conditions of Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
Processing activities
To facilitate the linkage of the NOGCA Cohort to NHS Digital data CARMS securely transfer the following identifiers to the DARS Data Production Team
Data flows to for this agreement will be as follows, on an annual basis:
• Audit Tumour ID
1. The Clinical Audits and Registries Management Service (CARMS) team at NHS England to send the cohort of patient identifiers (listed below) to the NHS England data production team.
• NHS Number
2. The NHS England data production team to link patient identifiers to HES APC, Civil Registration (Deaths) and Demographics data, covering the last 10 full years of HES data.
• DOB
3. The NHS England data production team to create an additional cohort (for case ascertainment) of oesophago-gastric cancer patients captured in HES, but not included in the supplied NOGCA cohort, using specified diagnosis or treatment codes. This will cover the same data period as data provided for the audit cohort.
• Sex
4. The NHS England data production team to remove patient identifiers from the linked data and the case ascertainment supplementary cohort data.
• Postcode
5. The NHS England data production team to send the de-identified data, including pseudonymised identifier (Audit ID) which is unique to each patient in the supplied cohort, or an equivalent generated pseudonymised identifier (Token Person ID) for each patient in the case ascertainment cohort, to the data recipient at the RCS.
The Audit Tumour ID is a pseudo-identifier which is unique to each patient in the cohort. This primary key is used to reduce the flow of patient identifiers where data is requested from other data sets and where data is sent from the NHS Digital CARMS team to the Clinical Effectiveness Unit (CEU). The key is held by the NHS Digital CARMS team, who are acting as Data Processor for HQIP.
Secure data transfers are facilitated through the Secure Electronic File Transfer (SEFT). The use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
Following
To facilitate the
linkage
to
of
the NOGCA
cohort, DARS securely transfer
cohort to NHS England data,
the
requested data to the NHS Digital
CARMS team
containing no identifiers other than the Audit Tumour ID. In turn CARMS
will securely transfer the
data to CEU for linking
following identifiers
to the
audit data.
NHS England data production team:
In tandem to this, the data processors will send patient identifiers and Audit Tumour ID to the respective data controllers for SACT, RTDS, PEDW, CMP, COSD, Cancer Registration data, to facilitate linkage.
- Audit ID
The specifics of each linkage are as follows:
- NHS Number
SACT
- date of birth (DOB)
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Office for Data Release (ODR) in Public Health England. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the ODR.
- sex
2. SACT data is returned to the RCS CEU with only the Audit Tumour ID, none of the other patient identifiers are returned.
- postcode
3. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CARMS team enables other data linkage activities, not covered by this agreement, to allow NOGCA to fulfil its contracted objectives and deliverables. Those data linkages are as follows:
The CEU then analyse the linked Audit/SACT dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.
- CARMS team send patient identifiers and Audit ID to NHS England’s National Cancer Registration and Analysis Service (NCRAS) team for linkage of cohort data to cancer registrations, chemo- and radiotherapy (SACT, RTDS) and cancer outcomes (COSD) data; the linked data is then pseudonymised and forwarded to the CEU.
RTDS
- CARMS team send patient identifiers and Audit ID to Digital Health and Care Wales (DHCW) for linkage of cohort data to Welsh hospital data (Patient Episode Database for Wales, PEDW); the linked data is then pseudonymised, returned to CARMS and then forwarded to the CEU.
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Office for Data Release (ODR), Public Health England
- CARMS team send patient identifiers and Audit ID to NHS England for linkage of cohort data to the Cancer Patient Experience Survey (CPES) data; the linked data is then pseudonymised and forwarded to the CEU.
2. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the Office for Data Release (ODR), Public Health England
In each case the data shared is limited to the minimum required to allow data linkage and does not include any other patient characteristics that would undermine the principle of data minimisation and which could increase the risk of reidentification. There will be no requirement and no attempt to reidentify individuals when using the data. The NHS England CARMS team have all relevant permissions in place to permit these linkages.
3. RTDS data is returned to RCS CEU with only the Audit Tumour ID, none of the other patient identifiers are returned.
Upon receipt of all the linked, pseudonymised data, the CEU at the RCS then analyse audit and other data sets to produce statistical tables for inclusion in the outputs listed in the next section. The CEU does not make record-level information available to any other party. The CEU only use the data for the stated purposes.
4. The Audit Tumour ID is used as a pseudonym to allow linkage to the Audit dataset.
At the RCS, the NOGCA data is stored in a secure IT environment and access to the data is only available for approved individuals and security is maintained through the use of passwords and encryption.
The CEU then analyse the linked Audit/RTDS dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.
Audit data can only be accessed and processed by substantive employees of the data processor and will not be accessed or processed by any other third parties not mentioned in this agreement. All those processing the data have received appropriate training in data protection and confidentiality.
PEDW:
All flows of record-level identifiable data are covered by the section 251 approval continuously supported by the Confidentiality Advisory Group (CAG). CAG application reference number is: ECC 1-06(c)/2011.
The audit will use the Hospital Site code where the patient was diagnosed to identify patients diagnosed in Wales. For these patients, the audit will then pull the NHS number, Date of Birth, Sex and Postcode to send the relevant cohort to NWIS. There is a risk that some patients are diagnosed in Wales but go on to receive treatment elsewhere, in which case the audit will not get any further information on those patients from PEDW.
The audits use role-based access to the data, which means that only staff involved in the audit work can be granted access to the strictly necessary information.
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by CARMS to NWIS only for patients identified as being diagnosed in Wales. The full audit cohort will not be sent to NWIS at any time. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the NWIS
2. PEDW data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. The PEDW data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
CMP:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by CARMS to ICNARC. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to INCARC
2. ICNARC data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. The ICNARC data with the Audit Tumour ID are sent by NHS Digital CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/ICNARC dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.
COSD:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by NHS Digital CARMS team to the Office for Data Release (ODR), Public Health England. An Audit Tumour ID is also sent to the Office for Data Release (ODR), Public Health England
2. COSD data is returned to RCS CEU with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/COSD dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.
Cancer Registration Data:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Office for Data Release (ODR), Public Health England. An Audit Tumour ID is also sent to the Office for Data Release (ODR), Public Health England.
2. Cancer Registration data is returned to RCS CEU with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. Cancer Registration data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
4. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/Cancer Registration dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.
The CEU at the RCS will then analyse the linked dataset to produce statistical tables for inclusion in the audit.
The NHS Digital CARMS team have all relevant permissions in place to permit these linkages.
NHS Digital data will only be accessed and processed by substantive employees of the data processors and will not be accessed or processed by any other third parties not mentioned in this agreement. All those processing the data have received appropriate training in data protection and confidentiality.
Once the data has been transferred to CEU, NOGCA data (including NHS Digital data) is stored in a secure, IT environment at the Royal College of Surgeons of England (RCS). Access to the data is only available for approved individuals and security is maintained through the use of passwords and encryption.
Expected output
Many of the
The
outputs produced by NOGCA are
the deliverables
contracted
deliverables
as
part of an on-going
part of the audit process commissioned by HQIP.
The
Audit
audit
measures the quality of care received by patients with oesophago-gastric
(OG)
cancer and oesophageal high-grade dysplasia within NHS services in England and Wales.
[21 words unchanged]
answer questions related to the care they receive and their outcomes. The
findings of the Audit are published in annual reports.
audit also provides national and trust level outcomes on surgical care.
• The National Oesophago-Gastric Cancer 2021 Annual report is targeted for publication in December 2022.
The findings of the audit are published in annual reports, short reports, scientific journal articles and presented at appropriate medical conferences. NHS trust-level outcomes are publicly available on audit web sites, which provides transparency and supports patient choice. In parallel, consultant- and trust-level outcome information are fed back to data providers to ensure the data quality and to reflect back on performance within each hospital. The intended audience for these outputs are people who deliver, receive, commission and regulate OG cancer care. This includes clinicians, healthcare professionals, hospital medical directors and chief executives, audit managers, commissioners, Care Quality Commission, policy makers such as NHS England, patients and the public.
• The National Oesophago-Gastric Cancer 2020 Annual report was published in December 2020.
Whilst all reports are written in a patient-friendly language and can be understood by a lay reader, the RCS also release Patient Reports, specifically aimed at non-medical audience. The CEU takes the opportunity to disseminate their reports as widely as possible - as can be seen from the conferences attended to promote annual reports, social media messages and further sharing of audit publications by partnering organisations, such as charities, professional bodies, as well as patient and carer groups.
• The National Oesophago-Gastric Cancer 2019 Annual report was published in December 2019
It is anticipated that the annual reports will be presented at the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS) and the British Society of Gastroenterology (BSG) annual meetings as a minimum and at other events as appropriate.
• This audit also published a short report in June 2019 and the summer of 2020. Reports for the Public and Patients are also published on an annual basis.
All reports are published on the NOGCA web site (https://www.nogca.org.uk/reports/) and on the HQIP’s NCAPOP pages (https://www.hqip.org.uk/a-z-of-nca/national-oesophago-gastric-cancer-audit/#.Y06iznbMKUk).
All reports are written in patient friendly language and can be understood by the lay reader, and The RCS takes the opportunity to disseminate their reports as widely as possible.
It is anticipated that the annual reports will be presented at the AUGIS and British Society of Gastroenterology (BSG) annual meetings as a minimum and others as appropriate
Publication in peer-reviewed journals will allow presentation of the Audit methodology and results in more detail than in the Annual reports. For example, the findings of the 2016 Annual Report for the OG audit were published in several journals and presented at several conferences in 2017 including the annual meetings of each of the British Society of Gastroenterologists (BSG) the Association of Upper Gastro-intestinal Society (AUGIS) and the Association of Colo-proctologists in Great Britain and Ireland (ACPGBI). Presentations were also made at the PHE Cancer Data and Outcomes Conference.
The audit will provide national and trust level outcomes on surgical care.
[1 paragraph unchanged]
• Percentage
- percentage
of patients with curative treatment intent
• Risk
- risk
adjusted 30- and 90-day post-operative mortality
• Percentage
- percentage
of adequate lymph node resections
• Percentage
- percentage
of positive resection margins
• Length
- length
of stay
Outliers at individual surgeon level and at trust level are identified through the analysis undertaken by the RCS CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Clinical Outcomes Publication (COP) data is published on the Association of Upper Gastrointestinal Surgeons (AUGIS) website before being made available to the public.
Trusts use the information in the annual reports to assess their care against national standards, clinical guidance and the performance of other trusts. For example, the audit outputs show whether trusts are following national recommendations such as those published by the National Institute of Health and Care Excellence (NICE) and whether there is any variation in the provision of care. Risk-adjusted outcomes such as 90-day post-operative mortality enable the identification of potential outlier trusts, which are notified of their outlier status and will investigate the potential causes (these may be related to data quality issues or clinical practice). In cases where clinical practice is identified as contributing to poorer outcomes, trusts’ review and improvement of practices can have a direct impact on patient care.
All outputs will be aggregated with small numbers suppressed except when assisting NHS Trusts in evaluating the reasons for their outlier status. Record level data for the relevant trust will be provided back to the trust upon request to NHS Digital, appropriate s251 is in place to allow the fact of death in relation to the two mortality indicators to be shared. Data files for these requests will be provided in a 256-bit encrypted zip file to a named individual via NHS.net; the password for the file will be sent to another named individual nominated by the trust, again using NHS.net email.
Outliers at individual surgeon-level and at trust-level are identified through the analysis undertaken by the CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Some of the Clinical Outcomes Publication (COP) data is published on the professional bodies' websites.
All outputs are aggregated with small numbers suppressed, except when assisting NHS trusts in evaluating the reasons for their outlier status. Record-level data for the relevant trust is then provided back to the trust upon request to CARMS team. The appropriate section 251 approval is in place to allow the fact of death, in relation to the two mortality indicators, to be shared.
Data files for these requests are provided in a secure manner to named individuals holding NHS.net accounts. Use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
Expected measurable benefits
By auditing the care delivered by cancer services,
we
NOGCA
can highlight areas where hospitals are doing well, and areas in which the quality of care can be improved. By producing
evidence-based
information for all NHS services, it allows cancer services to compare themselves with others in England and Wales and share examples of good practice.
[2 paragraphs unchanged]
The
trust
trust-level
profiles
and individual consultant level Clinical Outcomes Programme measures
are publicly available,
thus
providing transparency and supporting patient choice.
In the past, individual consultant-level reports had also been published, but more recently, due to the impact of Covid-19 on NHS services, these results are only used for feeding back to individuals and Trusts they referred to, for quality improvement and assurance purposes.
The individual trust profiles are produced based on analysis for the last year
(or for the last 3 years in the case of OG cancer)
which helps trusts/local health boards identify how they are performing against national and regional figures over time.
The results of the audit are published on an annual basis to ensure that NHS Services have the most up to date information.
The OG Cancer audit project team is also working with CQC to implement improvements in data quality and completeness. This is expected to benefit patients because the CQC reviews the quality of care and can intervene where the data highlights poor practices.
The Audit Project Team will continue to work with the Patient & Carer panel to produce a patient friendly report to support the annual report publications. The Panel continues to feedback that patients overwhelmingly support the audit and there has been a very positive response to the patient friendly version of the annual report. The patient friendly version of the report allows patients and their carers to better understand care pathways and potential outcomes.
The results of the audit are published on an annual basis to ensure that NHS Services have the most up to date information. The analyses provided in the Audit allow NOGCA to provide evidence-based recommendations with the aim to improve the quality of patient care.
The analyses provided in the Audit allow NOGCA to provide evidence-based recommendations with the aim to improve the quality of patient care.
The NOGCA Project Team will continue to work with the Patient & Carer panel to produce a patient friendly report to support the annual report publications. The Panel continues to feed back that patients overwhelmingly support the audit and there has been a very positive response to the patient friendly version of the annual report. The patient friendly version of the report allows patients and their carers to better understand care pathways and potential outcomes.
Benefits reported
The OG cancer audit has shown the following outcomes:
Quality assurance and improvement are among the key objectives of national clinical audits. The NOGCA evaluates the performance of NHS hospitals using quality indicators based on good practice recommendations from national clinical guidelines.
1. A reduction in the percentage of patients diagnosed following emergency admissions, compared to 5 years ago
The audit results enable hospitals to benchmark themselves, and they also lead to evidence-based recommendations in the mandatory audit publications: the annual report (which has a state-of-the-Nation perspective) and short reports which focus on specific topics.
2. An increase in the proportion of patients receiving curative surgery
The results of the audits also support health services, commissioners, as well as patients and their families by providing information on treatment outcomes and the various care pathways for patients with oesophago-gastric cancers.
3. Postoperative mortality (both 30 & 90 days) has continued to fall over the last 6 years
Each publication includes several recommendations for improving patient care. Therefore, the sections below are only a small sample of the impact and improvement to the healthcare system and to patients’ outcomes provided by the Gastrointestinal Cancer Audit Programme (GICAP).
4. Individual NHS trusts can download their own data for local use from the Audit IT system, thereby supporting local clinical audit and service evaluation. The IT system also provides hospitals with access to a series of online reports that describes their own performance relative to national benchmarks.
1.
In addition to these clinical benefits, the CEU are able to report on national figures of treatment and outcomes of patients diagnosed with high-grade dysplasia. This is the only national source of data on these patients in the UK.
The NOGCA collects data on patients with high-grade dysplasia (HGD), a pre-cancerous condition about which information is not included in any other national collections or databases. Therefore, NOGCA provides a unique insight into the quality of care received by patients with this condition and patient outcomes. The data relating to HGD have been collected since 2012 and have used the British Society of Gastroenterology’s guidelines on the diagnosis and management of HGD to formulate quality indicators and provide information for benchmarking and quality improvement by NHS services.
The OG Cancer Audit is now a repository of data on over 80,000 patients with OG cancer across England & Wales which represents a unique resource of clinical data. The data is available for secondary use by researchers through the
A State-of-the-Nation perspective is provided each year in the NOGCA Annual Report, and these reports have included recommendations for NHS services that focus on ensuring that:
HQIP Data Access Request Process (please note that this does not contain any NHS Digital data other than aggregated data with small numbers suppressed).
• all patients with high-grade dysplasia are discussed by a specialist multi-disciplinary team (MDT),
The OG Cancer audit project team is also working with CQC to implement improvements in data quality and completeness.
• patients with suspected high-grade dysplasia have their diagnosis confirmed by a second pathologist,
• patients are considered for endoscopic treatment (recommended first-line therapy) and services with unusual patterns of care explore why patients are not being offered endoscopic treatment
In the last year's annual report (2021), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased to 93% (compared to 86% two years earlier) and that 88% of patients had their diagnosis confirmed by a second pathologist (an increase from 84%) and 74% of patients had a plan for endoscopic therapy (an increase from 70%).
2.
In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS). This revealed overall rates of tumour-free resection margins that were above the recommended levels and variation in the number of lymph nodes examined as part of the tumour resection procedures. This led the audit to recommend that specialist surgical centres should:
• increase the proportion of patients who have the recommended minimum number of lymph nodes examined,
• review practice to decrease the proportion of patients who have positive surgical resection margins.
Since 2017, there have been improvements in lymph node yield and tumour-free circumferential margin rates among patients undergoing curative surgery for oesophageal cancer. The proportion of patients with 15 or more lymph nodes examined has increased from 81.9% among patients diagnosed in 2015/16 to 89.2% among those diagnosed in 2019/20. The proportion of patients with positive circumferential margins has decreased from 26.3% to 20.3%. Despite improvements nationally, NOGCA has found substantial variation in the way surgical specimens are prepared for histological assessment, which has prompted AUGIS and the Royal College of Pathologists to collaborate on developing recommendations for the standardisation of these methods.
Objective for processing
The Gastrointestinal Cancer Audit Programme (GICAP) comprises the National Oesophago-Gastric Cancer Audit (NOGCA) and the National Bowel Cancer Audit (NBOCA). This application relates solely to the NOGCA workstream. The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The audit programme has previously been managed under a single data sharing Agreement, but to minimise the risk of data breaches and to utilise the automated Civil Registrations (Deaths) and Demographics products the decision was made to split the overarching agreement into three separate and more specific agreements DARS-NIC-454669-H0H4X (linkage of NOGCA data), DARS-NIC-376603-K2J9R (linkage of NBOCA data), and DARS-NIC-423859-V7S0R (unlinked NBOCA and NOGCA quarterly data reports).
The National GICAP is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). NHS England and HQIP are the joint data controllers for the GICAP data, as together both organisations determine the purposes and means of processing. The Royal College of Surgeons of England (RCS) Clinical Effectiveness Unit (CEU) are the data processor. The CEU at the RCS will be processing the data under the direction of the data controllers, and only for the purposes described within this agreement.
NHS England is responsible for determining which projects/topics are included in the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is also involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are represented on the HQIP Data access request group which authorises data sharing applications from third parties.
The data requested is to be used for the assessment of performance of services under contract to HQIP.
The aim of the NOGCA is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales.
The Audit is based on prospectively collected, patient-level data on adult patients (aged 18 and over) diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia (HGD). It combines these patient records with records from other available national datasets to provide information to NHS trusts, patients, commissioners and other stakeholders on the patterns of care, from diagnosis to the end of the primary treatment pathway (both curative and palliative treatments) and patient outcomes. Apart from supplying a rich description of the care process, audits such as NOGCA aim to minimise the burden of data collection on clinical staff.
To support the delivery of NOGCA, the project team received and will continue to receive the below datasets from NHS England's Data Access Request Service (DARS) on an annual basis. There is no other reasonable means to achieve the purpose that is less intrusive to the data subjects. The level of the data is pseudonymised.
- Hospital Episode Statistics Admitted Patient Care (HES APC) - allows the investigation of the hospital-based part of patient's pathway and readmissions among patients with palliative treatment intent.
- Demographics and Civil Registrations (Deaths) - are required to better understand patient outcomes and track overall mortality, which is one of the audit’s key indicators, dictated by NHS England and the Care Quality Commission (CQC). Demographics product is needed to cross-reference the mortality records (numbers) and to trace records of patients exiting NHS.
The data provided also allows the audit to assess the impact of COVID-19 on the outcomes of the NOGCA cohort and how NHS services are recovering post pandemic.
To address the UK GDPR Principle of data minimisation, this request is limited to a cohort of ~99,000 individuals that have been registered in the NOGCA within the last 9 years, in England and Wales. It is crucial that no geographical exclusions are made, otherwise such limitations would compromise the value of the audit itself.
In addition, the cohort is limited to adult patients only (aged 18 and over). Also, only fields that have been deemed necessary for the purpose of this work have been requested.
The request also encompasses the data for patients who were identified in HES as having oesophago-gastric cancer or treatment but who were not registered with the audit. This cross-checking, feeding into the audit’s case ascertainment work, helps with assessing further the representativeness of NOGCA, the extent of possible missing data and any patterns relating to this, e.g., particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
National Data Opt-Outs (NDOs) have been historically applied to the data disseminated under this agreement following support from the Confidentiality Advisory Group (CAG).
The National Data Opt-Out (NDO) enables patients to opt-out from the use of their confidential patient information for research and planning purposes where the data flows rely upon Regulation 5 of the Health Service COPI (Control of Patient Information) Regulations 2002. It is a standard condition of support under Regulation 5 of the COPI Regulations 2002 that patient wishes are respected. In line with the National Data Opt-Out Operational Policy the Confidentiality Advisory Group (CAG) may exceptionally advise the decision-maker that the NDO should not apply to a specific data flow supported under Regulation 5 of the COPI Regulations 2002. In the case of the GICAP, this has been supported. The justification to not apply the NDOs is as below:
The GICAP’s work in detecting statistical outliers for key outcome indicators enables the identification of potential patient safety issues, leading to local improvement activities where necessary. There are many examples – which were submitted to the CAG for their consideration - from across both audits of the impact of outlier reporting on patient safety.
The pseudonymised data is sent by England to the RCS's CEU and it is then linked to pseudonymised NOGCA audit data held by CEU. This is, in turn, linked to other pseudonymised assets (provided by other organisations), such as the Systemic Anti-Cancer Therapy (SACT) Dataset, Radiotherapy Dataset (RTDS), Patient Episode Database for Wales (PEDW), the National Cancer Patient Experience Survey (CPES), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
HQIP and NHS England request that a mortality indicator, created from NHS Digital data, can be onwardly shared with organisations who request it as part of HQIP’s data access request process.
Any data shared for this purpose must be subject to the conditions that the recipient organisation:
i. must not combine it with other datasets which could potentially increase the risk of reidentification for individuals in the dataset;
ii. must not attempt to re-identify individuals in the dataset;
iii. must not onwardly share the dataset;
iv. must use the dataset for a defined purpose;
v. must not publish the data.
Under the terms of this Agreement, HQIP and NHS England are responsible for ensuring compliance with the above conditions and for confirming destruction of the data by the recipient organisation once the data is no longer required for the purpose for which it was shared.
HQIP and NHS England both rely on Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients. The processing meets the conditions of Schedule 1 Part 1 paragraph 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
NHS England rely on Article 9 (2) (h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance. The processing meets the conditions of Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.
Expected output
The outputs produced by NOGCA are the deliverables contracted as part of the audit process commissioned by HQIP.
The audit measures the quality of care received by patients with oesophago-gastric (OG) cancer and oesophageal high-grade dysplasia within NHS services in England and Wales. It is designed to evaluate the care pathway followed by patients once they have been diagnosed with either condition, and to answer questions related to the care they receive and their outcomes. The audit also provides national and trust level outcomes on surgical care.
The findings of the audit are published in annual reports, short reports, scientific journal articles and presented at appropriate medical conferences. NHS trust-level outcomes are publicly available on audit web sites, which provides transparency and supports patient choice. In parallel, consultant- and trust-level outcome information are fed back to data providers to ensure the data quality and to reflect back on performance within each hospital. The intended audience for these outputs are people who deliver, receive, commission and regulate OG cancer care. This includes clinicians, healthcare professionals, hospital medical directors and chief executives, audit managers, commissioners, Care Quality Commission, policy makers such as NHS England, patients and the public.
Whilst all reports are written in a patient-friendly language and can be understood by a lay reader, the RCS also release Patient Reports, specifically aimed at non-medical audience. The CEU takes the opportunity to disseminate their reports as widely as possible - as can be seen from the conferences attended to promote annual reports, social media messages and further sharing of audit publications by partnering organisations, such as charities, professional bodies, as well as patient and carer groups.
It is anticipated that the annual reports will be presented at the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS) and the British Society of Gastroenterology (BSG) annual meetings as a minimum and at other events as appropriate.
All reports are published on the NOGCA web site (https://www.nogca.org.uk/reports/) and on the HQIP’s NCAPOP pages (https://www.hqip.org.uk/a-z-of-nca/national-oesophago-gastric-cancer-audit/#.Y06iznbMKUk).
The outputs are reported at national, Cancer Alliance and NHS Trust level. Examples of specific statistical outputs are:
- percentage of patients with curative treatment intent
- risk adjusted 30- and 90-day post-operative mortality
- percentage of adequate lymph node resections
- percentage of positive resection margins
- length of stay
Trusts use the information in the annual reports to assess their care against national standards, clinical guidance and the performance of other trusts. For example, the audit outputs show whether trusts are following national recommendations such as those published by the National Institute of Health and Care Excellence (NICE) and whether there is any variation in the provision of care. Risk-adjusted outcomes such as 90-day post-operative mortality enable the identification of potential outlier trusts, which are notified of their outlier status and will investigate the potential causes (these may be related to data quality issues or clinical practice). In cases where clinical practice is identified as contributing to poorer outcomes, trusts’ review and improvement of practices can have a direct impact on patient care.
Outliers at individual surgeon-level and at trust-level are identified through the analysis undertaken by the CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Some of the Clinical Outcomes Publication (COP) data is published on the professional bodies' websites.
All outputs are aggregated with small numbers suppressed, except when assisting NHS trusts in evaluating the reasons for their outlier status. Record-level data for the relevant trust is then provided back to the trust upon request to CARMS team. The appropriate section 251 approval is in place to allow the fact of death, in relation to the two mortality indicators, to be shared.
Data files for these requests are provided in a secure manner to named individuals holding NHS.net accounts. Use of file encryption and passwords also ensures the appropriate data security standards. Access to the data is role-based and it is granted only to those who are necessary to perform specific tasks.
Benefits reported
Quality assurance and improvement are among the key objectives of national clinical audits. The NOGCA evaluates the performance of NHS hospitals using quality indicators based on good practice recommendations from national clinical guidelines.
The audit results enable hospitals to benchmark themselves, and they also lead to evidence-based recommendations in the mandatory audit publications: the annual report (which has a state-of-the-Nation perspective) and short reports which focus on specific topics.
The results of the audits also support health services, commissioners, as well as patients and their families by providing information on treatment outcomes and the various care pathways for patients with oesophago-gastric cancers.
Each publication includes several recommendations for improving patient care. Therefore, the sections below are only a small sample of the impact and improvement to the healthcare system and to patients’ outcomes provided by the Gastrointestinal Cancer Audit Programme (GICAP).
1.
The NOGCA collects data on patients with high-grade dysplasia (HGD), a pre-cancerous condition about which information is not included in any other national collections or databases. Therefore, NOGCA provides a unique insight into the quality of care received by patients with this condition and patient outcomes. The data relating to HGD have been collected since 2012 and have used the British Society of Gastroenterology’s guidelines on the diagnosis and management of HGD to formulate quality indicators and provide information for benchmarking and quality improvement by NHS services.
A State-of-the-Nation perspective is provided each year in the NOGCA Annual Report, and these reports have included recommendations for NHS services that focus on ensuring that:
• all patients with high-grade dysplasia are discussed by a specialist multi-disciplinary team (MDT),
• patients with suspected high-grade dysplasia have their diagnosis confirmed by a second pathologist,
• patients are considered for endoscopic treatment (recommended first-line therapy) and services with unusual patterns of care explore why patients are not being offered endoscopic treatment
In the last year's annual report (2021), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased to 93% (compared to 86% two years earlier) and that 88% of patients had their diagnosis confirmed by a second pathologist (an increase from 84%) and 74% of patients had a plan for endoscopic therapy (an increase from 70%).
2.
In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS). This revealed overall rates of tumour-free resection margins that were above the recommended levels and variation in the number of lymph nodes examined as part of the tumour resection procedures. This led the audit to recommend that specialist surgical centres should:
• increase the proportion of patients who have the recommended minimum number of lymph nodes examined,
• review practice to decrease the proportion of patients who have positive surgical resection margins.
Since 2017, there have been improvements in lymph node yield and tumour-free circumferential margin rates among patients undergoing curative surgery for oesophageal cancer. The proportion of patients with 15 or more lymph nodes examined has increased from 81.9% among patients diagnosed in 2015/16 to 89.2% among those diagnosed in 2019/20. The proportion of patients with positive circumferential margins has decreased from 26.3% to 20.3%. Despite improvements nationally, NOGCA has found substantial variation in the way surgical specimens are prepared for histological assessment, which has prompted AUGIS and the Royal College of Pathologists to collaborate on developing recommendations for the standardisation of these methods.
DARS-NIC-454669-H0H4X-v1.2 31 July 2021 to 6 May 2023
- Title
- National Gastro Intestinal Cancer Audit Programme (GICAP)- National Oesophago-Gastric Cancer Audit (NOGCA)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 47
Datasets: Civil Registrations of Death; Demographics; HES-ID to MPS-ID HES Admitted Patient Care; Hospital Episode Statistics Admitted Patient Care (HES APC)
What changed from DARS-NIC-454669-H0H4X-v0.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2021-07-31 | |
| Civil Registrations of Death: type of data | Identifiable | |
| Demographics: type of data | Identifiable | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): type of data | Identifiable |
Datasets: + HES-ID to MPS-ID HES Admitted Patient Care
Objective for processing
[13 paragraphs unchanged] •The Audit wish to receive provisional ('M13') data where this is available to support the timely delivery of the NOGCA annual reports. [12 paragraphs unchanged]
Unchanged: Processing activities, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
The Gastro-Intestinal Cancer Audit Programme (GICAP) comprises of the National Bowel Cancer Audit (NBOCA) and the National Oesophago-Gastric Cancer Audit (NOGCA).
A contract was awarded in early 2018 by Healthcare Quality Improvement Partnership (HQIP) to the Royal College of Surgeons and NHS Digital (the legal entity of the data processor is “HSCIC” who are trading as “NHS Digital”) to deliver the Gastro-Intestinal (GI) Cancer audit for 3 years, until 31st May 2021, this has now been extended to May 2023.
The National Gastro-Intestinal Cancer Audit Programme is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).
The purposes for processing the data under this Agreement have joint Data Controllership consisting of the Healthcare Quality Improvement Partnership (HQIP) and NHS England. HQIP is commissioned by NHS England to commission and manage the Gastro-Intestinal Cancer Audit Programme (GICAP), NHS England is a controller of the GICAP jointly with HQIP as together both organisations determine the purposes and means of processing.
NHS England is responsible for determining which projects/topics are included as part of the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are a representative upon the HQIP Data access request group which authorises data sharing applications from third parties.
The data requested is to be used for the performance of services under contract to the Healthcare Quality Improvement Partnership (HQIP). All Intellectual Property Rights (IPR) in any guidance, specifications, instructions, toolkits, plans, data, drawings, databases, patents, patterns, models, design, or other material, furnished or made available to NHS Digital as part of this request remains vested solely in HQIP. This IPR is in turn vested to NHS England through HQIP’s headline contract with them.
The Clinical Audits and Registries Management Service (CARMS) at NHS Digital, and the Clinical Excellence Unit (CEU) at the Royal College of Surgeons (RCS) will be processing the data under the direction of the data controllers and only for the purposes described within this Agreement.
The aim of the Oesophago-Gastric Cancer Audit is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales. The Audit is based on prospectively collected patient level-data on patients diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia
To support the delivery of NOGCA, the Clinical Audits and Registries Management Service (CARMS) within NHS Digital have received and will continue to receive HES APC, Civil Registration (Deaths) and Demographics data on an annual basis. The applicant is satisfied that there is no other reasonable means for the data processor to achieve the purpose that is less intrusive to the data subjects.
• HES APC will allow the investigation of hospital utilisations and readmissions among patients with palliative treatment intent, with a specific focus on volume of care (number of procedures by the individual) and length of stay
• Demographics and Civil Registrations are requested to measure the performance of trusts and surgeons on the following measures: 30-day post-operative mortality and 90-day post-operative mortality.
• The data received will also allow the Audit to assess the impact of COVID-19 on hospital care and outcomes for NOGCA cohort members.
•The Audit wish to receive provisional ('M13') data where this is available to support the timely delivery of the NOGCA annual reports.
To address the GDPR Principle of Data Minimisation this request is limited to a cohort of ~85,000 individuals that make up the NOGCA cohort. In addition, only data fields that have been deemed necessary for the purpose of this work have been requested.
The OG Cancer audit has been continuous since 2006. Data is retained from that time up to the present. Retention of the data is essential to answering queries about previously published reports, although each audit only uses the five most recent years of data for reporting.
The data received from the Data Access Request Service (DARS, NHS Digital) is sent to CEU via CARMS to be linked to NOGCA audit data held by CEU. This is in turn linked to the Systemic Anti-Cancer Therapy (SACT) Dataset, Radiotherapy Dataset (RTDS), Patient Episodes Database for Wales (PEDW), the Case Mix Programme (CMP), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
• SACT: The SACT data covers patients receiving cancer chemotherapy in, or funded by, the NHS in England. This data is collected by the National Cancer Registration and Analysis Service (NCRAS) within Public Health England (PHE) and can be requested via the Office for Data Release (ODR). Linkage will allow a more in-depth analysis of specific chemotherapy regimens and changes to prescribed treatments.
• RTDS: The RTDS hold information on every patient treated with Radiotherapy in the National Health Service in the UK. This data is collected by the NCRAS within Public Health England (PHE) and can be requested via the ODR. The linkage will allow the audit to explore whether the radiotherapy data items in the Audit could be dropped to ease the burden of data collection.
• PEDW: PEDW records all episodes of inpatient and day case activity in NHS Wales Hospitals. This is inclusive of planned and emergency admissions and minor and major operations. Hospital activity for Welsh residents treated in English Hospitals is also included. This data is collected by NHS Wales Informatics Service (NWIS), from whom this data can be requested.
• CMP: The CMP is hosted by the Intensive Care National Audit and Research Centre (ICNARC), from whom the CMP data can be requested. CMP is an audit of patient’s outcomes from adult, general critical care units (intensive care and combined intensive care/high dependency units) covering England, Wales, and Northern Ireland. Linkage will allow reporting patterns of care and outcomes while patients were admitted to critical care and the characteristics of the patients admitted to critical care.
• COSD: When linked to NOGCA data, the COSD linkage will enable GICAP to further determine the pathway of care for patients with advanced disease and to describe in further detail the management and outcomes of patients with GI cancer. This data is collected by NCRAS within PHE and can be requested via ODR.
• Cancer Registration: This linkage will supplement the cases that are recorded in COSD, as Cancer Registration services undertake active case finding and will pick up cases of oesophago-gastric cancer that have not been entered into the audits. This will help to further assess the representativeness of patients captured in NOGCA It is intended to use the data to assess the extent of possible missing data and any patterns relating to this, e.g., geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
HQIP and NHS England both rely on the Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.
NHS England rely on Article 9(2)(h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance.
Expected output
Many of the outputs produced by NOGCA are contracted deliverables as part of an on-going part of the audit process commissioned by HQIP.
The Audit measures the quality of care received by patients with oesophago-gastric cancer and oesophageal high-grade dysplasia within NHS services in England and Wales. It is designed to evaluate the care pathway followed by patients once they have been diagnosed with either condition, and to answer questions related to the care they receive and their outcomes. The findings of the Audit are published in annual reports.
• The National Oesophago-Gastric Cancer 2021 Annual report is targeted for publication in December 2022.
• The National Oesophago-Gastric Cancer 2020 Annual report was published in December 2020.
• The National Oesophago-Gastric Cancer 2019 Annual report was published in December 2019
• This audit also published a short report in June 2019 and the summer of 2020. Reports for the Public and Patients are also published on an annual basis.
All reports are written in patient friendly language and can be understood by the lay reader, and The RCS takes the opportunity to disseminate their reports as widely as possible.
It is anticipated that the annual reports will be presented at the AUGIS and British Society of Gastroenterology (BSG) annual meetings as a minimum and others as appropriate
Publication in peer-reviewed journals will allow presentation of the Audit methodology and results in more detail than in the Annual reports. For example, the findings of the 2016 Annual Report for the OG audit were published in several journals and presented at several conferences in 2017 including the annual meetings of each of the British Society of Gastroenterologists (BSG) the Association of Upper Gastro-intestinal Society (AUGIS) and the Association of Colo-proctologists in Great Britain and Ireland (ACPGBI). Presentations were also made at the PHE Cancer Data and Outcomes Conference.
The audit will provide national and trust level outcomes on surgical care.
The outputs are reported at National, Cancer Alliance and NHS Trust Level. Examples of specific statistical outputs are:
• Percentage of patients with curative treatment intent
• Risk adjusted 30- and 90-day post-operative mortality
• Percentage of adequate lymph node resections
• Percentage of positive resection margins
• Length of stay
Outliers at individual surgeon level and at trust level are identified through the analysis undertaken by the RCS CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Clinical Outcomes Publication (COP) data is published on the Association of Upper Gastrointestinal Surgeons (AUGIS) website before being made available to the public.
All outputs will be aggregated with small numbers suppressed except when assisting NHS Trusts in evaluating the reasons for their outlier status. Record level data for the relevant trust will be provided back to the trust upon request to NHS Digital, appropriate s251 is in place to allow the fact of death in relation to the two mortality indicators to be shared. Data files for these requests will be provided in a 256-bit encrypted zip file to a named individual via NHS.net; the password for the file will be sent to another named individual nominated by the trust, again using NHS.net email.
Benefits reported
The OG cancer audit has shown the following outcomes:
1. A reduction in the percentage of patients diagnosed following emergency admissions, compared to 5 years ago
2. An increase in the proportion of patients receiving curative surgery
3. Postoperative mortality (both 30 & 90 days) has continued to fall over the last 6 years
4. Individual NHS trusts can download their own data for local use from the Audit IT system, thereby supporting local clinical audit and service evaluation. The IT system also provides hospitals with access to a series of online reports that describes their own performance relative to national benchmarks.
In addition to these clinical benefits, the CEU are able to report on national figures of treatment and outcomes of patients diagnosed with high-grade dysplasia. This is the only national source of data on these patients in the UK.
The OG Cancer Audit is now a repository of data on over 80,000 patients with OG cancer across England & Wales which represents a unique resource of clinical data. The data is available for secondary use by researchers through the
HQIP Data Access Request Process (please note that this does not contain any NHS Digital data other than aggregated data with small numbers suppressed).
The OG Cancer audit project team is also working with CQC to implement improvements in data quality and completeness.
DARS-NIC-454669-H0H4X-v0.3 7 May 2021 to 6 May 2023
- Title
- National Gastro Intestinal Cancer Audit Programme (GICAP)- National Oesophago-Gastric Cancer Audit (NOGCA)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 12
Datasets: Civil Registrations of Death; Demographics; Hospital Episode Statistics Admitted Patient Care (HES APC)
Objective for processing
The Gastro-Intestinal Cancer Audit Programme (GICAP) comprises of the National Bowel Cancer Audit (NBOCA) and the National Oesophago-Gastric Cancer Audit (NOGCA).
A contract was awarded in early 2018 by Healthcare Quality Improvement Partnership (HQIP) to the Royal College of Surgeons and NHS Digital (the legal entity of the data processor is “HSCIC” who are trading as “NHS Digital”) to deliver the Gastro-Intestinal (GI) Cancer audit for 3 years, until 31st May 2021, this has now been extended to May 2023.
The National Gastro-Intestinal Cancer Audit Programme is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).
The purposes for processing the data under this Agreement have joint Data Controllership consisting of the Healthcare Quality Improvement Partnership (HQIP) and NHS England. HQIP is commissioned by NHS England to commission and manage the Gastro-Intestinal Cancer Audit Programme (GICAP), NHS England is a controller of the GICAP jointly with HQIP as together both organisations determine the purposes and means of processing.
NHS England is responsible for determining which projects/topics are included as part of the audits. HQIP, as commissioner of GICAP is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the GICAP participates within specification development, procurement and project extension activities and authorises the publication of project outputs.
NHS England is involved with developing the scope and purpose of the GICAP project through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are a representative upon the HQIP Data access request group which authorises data sharing applications from third parties.
The data requested is to be used for the performance of services under contract to the Healthcare Quality Improvement Partnership (HQIP). All Intellectual Property Rights (IPR) in any guidance, specifications, instructions, toolkits, plans, data, drawings, databases, patents, patterns, models, design, or other material, furnished or made available to NHS Digital as part of this request remains vested solely in HQIP. This IPR is in turn vested to NHS England through HQIP’s headline contract with them.
The Clinical Audits and Registries Management Service (CARMS) at NHS Digital, and the Clinical Excellence Unit (CEU) at the Royal College of Surgeons (RCS) will be processing the data under the direction of the data controllers and only for the purposes described within this Agreement.
The aim of the Oesophago-Gastric Cancer Audit is to assess the quality of care received by patients with oesophago-gastric cancer or oesophageal high-grade dysplasia (a pre-cancerous condition) in England and Wales. The Audit is based on prospectively collected patient level-data on patients diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia
To support the delivery of NOGCA, the Clinical Audits and Registries Management Service (CARMS) within NHS Digital have received and will continue to receive HES APC, Civil Registration (Deaths) and Demographics data on an annual basis. The applicant is satisfied that there is no other reasonable means for the data processor to achieve the purpose that is less intrusive to the data subjects.
• HES APC will allow the investigation of hospital utilisations and readmissions among patients with palliative treatment intent, with a specific focus on volume of care (number of procedures by the individual) and length of stay
• Demographics and Civil Registrations are requested to measure the performance of trusts and surgeons on the following measures: 30-day post-operative mortality and 90-day post-operative mortality.
• The data received will also allow the Audit to assess the impact of COVID-19 on hospital care and outcomes for NOGCA cohort members.
To address the GDPR Principle of Data Minimisation this request is limited to a cohort of ~85,000 individuals that make up the NOGCA cohort. In addition, only data fields that have been deemed necessary for the purpose of this work have been requested.
The OG Cancer audit has been continuous since 2006. Data is retained from that time up to the present. Retention of the data is essential to answering queries about previously published reports, although each audit only uses the five most recent years of data for reporting.
The data received from the Data Access Request Service (DARS, NHS Digital) is sent to CEU via CARMS to be linked to NOGCA audit data held by CEU. This is in turn linked to the Systemic Anti-Cancer Therapy (SACT) Dataset, Radiotherapy Dataset (RTDS), Patient Episodes Database for Wales (PEDW), the Case Mix Programme (CMP), Cancer Outcomes and Services Dataset (COSD) and Cancer Registration Data.
• SACT: The SACT data covers patients receiving cancer chemotherapy in, or funded by, the NHS in England. This data is collected by the National Cancer Registration and Analysis Service (NCRAS) within Public Health England (PHE) and can be requested via the Office for Data Release (ODR). Linkage will allow a more in-depth analysis of specific chemotherapy regimens and changes to prescribed treatments.
• RTDS: The RTDS hold information on every patient treated with Radiotherapy in the National Health Service in the UK. This data is collected by the NCRAS within Public Health England (PHE) and can be requested via the ODR. The linkage will allow the audit to explore whether the radiotherapy data items in the Audit could be dropped to ease the burden of data collection.
• PEDW: PEDW records all episodes of inpatient and day case activity in NHS Wales Hospitals. This is inclusive of planned and emergency admissions and minor and major operations. Hospital activity for Welsh residents treated in English Hospitals is also included. This data is collected by NHS Wales Informatics Service (NWIS), from whom this data can be requested.
• CMP: The CMP is hosted by the Intensive Care National Audit and Research Centre (ICNARC), from whom the CMP data can be requested. CMP is an audit of patient’s outcomes from adult, general critical care units (intensive care and combined intensive care/high dependency units) covering England, Wales, and Northern Ireland. Linkage will allow reporting patterns of care and outcomes while patients were admitted to critical care and the characteristics of the patients admitted to critical care.
• COSD: When linked to NOGCA data, the COSD linkage will enable GICAP to further determine the pathway of care for patients with advanced disease and to describe in further detail the management and outcomes of patients with GI cancer. This data is collected by NCRAS within PHE and can be requested via ODR.
• Cancer Registration: This linkage will supplement the cases that are recorded in COSD, as Cancer Registration services undertake active case finding and will pick up cases of oesophago-gastric cancer that have not been entered into the audits. This will help to further assess the representativeness of patients captured in NOGCA It is intended to use the data to assess the extent of possible missing data and any patterns relating to this, e.g., geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.
HQIP and NHS England both rely on the Article 6 (1) (e) of the GDPR as the lawful basis of processing - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.
HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.
NHS England rely on Article 9(2)(h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance.
Expected output
Many of the outputs produced by NOGCA are contracted deliverables as part of an on-going part of the audit process commissioned by HQIP.
The Audit measures the quality of care received by patients with oesophago-gastric cancer and oesophageal high-grade dysplasia within NHS services in England and Wales. It is designed to evaluate the care pathway followed by patients once they have been diagnosed with either condition, and to answer questions related to the care they receive and their outcomes. The findings of the Audit are published in annual reports.
• The National Oesophago-Gastric Cancer 2021 Annual report is targeted for publication in December 2022.
• The National Oesophago-Gastric Cancer 2020 Annual report was published in December 2020.
• The National Oesophago-Gastric Cancer 2019 Annual report was published in December 2019
• This audit also published a short report in June 2019 and the summer of 2020. Reports for the Public and Patients are also published on an annual basis.
All reports are written in patient friendly language and can be understood by the lay reader, and The RCS takes the opportunity to disseminate their reports as widely as possible.
It is anticipated that the annual reports will be presented at the AUGIS and British Society of Gastroenterology (BSG) annual meetings as a minimum and others as appropriate
Publication in peer-reviewed journals will allow presentation of the Audit methodology and results in more detail than in the Annual reports. For example, the findings of the 2016 Annual Report for the OG audit were published in several journals and presented at several conferences in 2017 including the annual meetings of each of the British Society of Gastroenterologists (BSG) the Association of Upper Gastro-intestinal Society (AUGIS) and the Association of Colo-proctologists in Great Britain and Ireland (ACPGBI). Presentations were also made at the PHE Cancer Data and Outcomes Conference.
The audit will provide national and trust level outcomes on surgical care.
The outputs are reported at National, Cancer Alliance and NHS Trust Level. Examples of specific statistical outputs are:
• Percentage of patients with curative treatment intent
• Risk adjusted 30- and 90-day post-operative mortality
• Percentage of adequate lymph node resections
• Percentage of positive resection margins
• Length of stay
Outliers at individual surgeon level and at trust level are identified through the analysis undertaken by the RCS CEU. Notifications are sent out for response from the individual surgeons and/or the trusts (as applicable). Their responses on the outlier measures are included in an appendix to the annual report. Clinical Outcomes Publication (COP) data is published on the Association of Upper Gastrointestinal Surgeons (AUGIS) website before being made available to the public.
All outputs will be aggregated with small numbers suppressed except when assisting NHS Trusts in evaluating the reasons for their outlier status. Record level data for the relevant trust will be provided back to the trust upon request to NHS Digital, appropriate s251 is in place to allow the fact of death in relation to the two mortality indicators to be shared. Data files for these requests will be provided in a 256-bit encrypted zip file to a named individual via NHS.net; the password for the file will be sent to another named individual nominated by the trust, again using NHS.net email.
Benefits reported
The OG cancer audit has shown the following outcomes:
1. A reduction in the percentage of patients diagnosed following emergency admissions, compared to 5 years ago
2. An increase in the proportion of patients receiving curative surgery
3. Postoperative mortality (both 30 & 90 days) has continued to fall over the last 6 years
4. Individual NHS trusts can download their own data for local use from the Audit IT system, thereby supporting local clinical audit and service evaluation. The IT system also provides hospitals with access to a series of online reports that describes their own performance relative to national benchmarks.
In addition to these clinical benefits, the CEU are able to report on national figures of treatment and outcomes of patients diagnosed with high-grade dysplasia. This is the only national source of data on these patients in the UK.
The OG Cancer Audit is now a repository of data on over 80,000 patients with OG cancer across England & Wales which represents a unique resource of clinical data. The data is available for secondary use by researchers through the
HQIP Data Access Request Process (please note that this does not contain any NHS Digital data other than aggregated data with small numbers suppressed).
The OG Cancer audit project team is also working with CQC to implement improvements in data quality and completeness.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 1 version: DARS-NIC-454669-H0H4X-v0.3
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September 2021
1 version added: DARS-NIC-454669-H0H4X-v1.2
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October 2021
Amended DARS-NIC-454669-H0H4X-v1.2
- Datasets: + HES-ID to MPS-ID HES Admitted Patient Care
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April 2023
1 version added: DARS-NIC-454669-H0H4X-v2.5
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February 2024
1 version added: DARS-NIC-454669-H0H4X-v3.3
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February 2025
1 version added: DARS-NIC-454669-H0H4X-v4.4
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October 2025
Renamed Applicant organisation: NHS England (Quarry House) now named NHS England. Not counted as a change.Renamed Data controllers: NHS England (Quarry House) now named NHS England. Not counted as a change.
"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-454669-H0H4X, “National Gastrointestinal Cancer Audit Programme (GICAP) - National Oesophago-Gastric Cancer Audit (NOGCA)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-454669-h0h4x/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-454669-H0H4X to see the original rows.