National Gastrointestinal Cancer Audit Programme (GICAP) (ODR1819_260)

NHS England and HQIP as joint data controllers, and The Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS) as data processors requires access to National Disease Registration Service (NDRS) data for the purpose of delivering the following audit programme:

National Gastrointestinal Cancer Audit Programme (GICAP).

GICAP comprises the National Bowel Cancer Audit (NBOCA) and the National Oesophago-Gastric Cancer Audit (NOGCA).

The following is a summary of the objectives of the NBOCA:

NBOCA aims to assess the quality of care received by patients with bowel cancer in England and Wales, providing those who commission, deliver and use services for people with colorectal cancer with high-quality data on the process and outcomes of NHS care

The following is a summary of the objectives of the NOGCA:

NOGCA aims 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.

Both audits respectively undertake case ascertainment work for bowel cancer and oesophago-gastric cancer or oesophageal high-grade dysplasia.

Each audit combines patient records with data from other 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. The Audit aims to supply a rich description of the care process, while also minimising the burden of data collection on clinical staff.

The following NDRS datasets are accessed in support of the audit’s aims:

• NDRS Cancer Registrations- allows the Audit to identify patients omitted in the data submitted to the Audit by hospitals, and facilitates the reporting of all patients diagnosed with GI cancers. This will help to further assess the representativeness of patients captured in NBOCA and NOGCA. Such cross-referencing is also intended to assess the extent of possible missing data and identify any patterns relating to this, e.g., geographical areas under-reporting cases or any potential linkage to under-presentation related to social deprivation.

• NDRS Rapid Cancer Registrations- is used as a more up-to-date and more frequent substitute for Cancer Registry, where more timely data is necessary. Rapid Cancer Registrations data, which is routinely linked with RTDS and SACT data sets, provide up-to-date diagnostic, surgical, radiotherapy and systemic treatment data for relevant patients that complements the annual Cancer Registry data. It is one of the programme’s key deliverables to provide accurate and complete quarterly reports to hospitals and Rapid Registrations data is necessary to support this requirement.

• NDRS National Radiotherapy Dataset (RTDS)- Allows the audit to build the full picture of the treatment provided to cancer patients, in-depth analysis of specific regimens and changes to prescribed treatments.

• NDRS Systemic Anti-Cancer Therapy (SACT) Dataset- Allows the audit to build the full picture of the treatment provided to cancer patients, in-depth analysis of specific regimens and changes to prescribed treatments.

• NDRS Linked Cancer Waiting Times (CWT)- enables audits to describe patterns of waiting times along the cancer care pathways and validate the dates captured in audit data. CWT data will also provide the audit with details about those referrals for suspected cancer which do not result in a cancer diagnosis and provide a more detailed picture of the care pathway leading up to diagnosis.

• NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC)- required to build a more comprehensive picture of complex patient pathways and outcomes, such as through the capture of readmissions to hospital and complications after treatment, and detailed information about procedures using OPCS codes. Furthermore, HES can be used to identify complex patient groups, such as those with additional diagnoses that contribute to co-morbidity indices and frailty indices, enabling the audits to describe the treatment pathways and outcomes of patient subgroups, understand patterns of treatment variation and ensure appropriate risk adjustment of indicators.

• NDRS Linked Diagnostic Imaging Dataset (DIDS)(NBOCA Only)- used to determine the imaging pathways employed in colorectal cancer and associated impact on patient outcomes and the use of neoadjuvant and adjuvant therapy.

• NDRS Somatic Molecular Dataset (NBOCA Only)- Individualised treatment based on the assessment of germline polymorphisms or sporadic abnormalities e.g. mutations occurring in tumour cells, have been key to advances in cancer medicine over the past 20 years. The guidance for molecular testing in colorectal cancer now includes indications to test for various abnormalities as described above. Linking germline and somatic genomic data with audit records will provide a completer and more accurate picture of this part of the patient pathway. It will allow assessment of compliance with National Institute of Health and Care Excellence (NICE) guidance, which recommends a number of molecular assessments as part of standard practice.

• NDRS Cancer Patient Experience Survey (CPES) (NBOCA Only) - The patients and other stakeholders on the NBOCA Clinical Advisory Group have prioritised patient experience as a key measure of care quality, therefore, the linkage of NBOCA data to CPES will be essential to meet that requirement.

The Audit Programme wishes to retain the data already held along with additional Cancer Outcomes and Services Dataset (COSD) items under the Cancer Registrations Products.

The level of the data held is:

• Pseudonymised

To address the GPDR Principle of Data Minimisation the NHS England CARMS Team and the RCS have had lengthy discussions with the NHS England Data Production Team to develop the data specification. This exercise has ensured that only the minimum amount of data necessary for achieving the purposes described within this DSA is being requested.

The data is minimised as follows:

• Data is limited to a cohort sent in by the Audit of ~340,000 (~240,000 for NBOCA and ~100,000 for NOGCA) of patients diagnosed between 01/04/2014 and 31/03/2022; and patients aged 18+ who have a diagnosis based on select ICD codes for Bowel and OG Cancer who have not been included in the cohort provided.

• For all patients (i.e. those in the cohort provided, and those who are not in the cohort and have been identified using relevant ICD codes) data is requested from 01/04/2013 (or the latest available record) to the latest available for all data products

• Some datasets are limited to NBOCA only (DIDs, Somatic Molecular, CPES).

The National Gastrointestinal 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). NHS England and HQIP are the joint controllers for the GICAP data, as together both organisations determine the purposes and means of processing.

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 with statutory responsibilities to improve the 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 Schedule 1 Part 1 condition 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons on behalf of NHS England.

NHS England relies 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 a contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England is responsible for the provision of health and social care, and the management of systems and compliance. The processing meets Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.

The funding is provided by NHS England via the intermediary of HQIP.

The RCS is a processor acting under the instructions of NHS England and HQIP.

Royal College of Surgeons of England (RCS), sub-contracted the then NHS Digital Clinical Audit and Registries Management Service (CARMS) (now NHS England) to assist in delivering the Gastrointestinal (GI) Cancer audit. The CARMS transferred data to the NDRS team for data linkage purposes. The CARMS have not processed any data subsequently released to the data recipient under this Agreement, and CARMS are no longer involved in the GICAP Audit.

Alongside substantive employees of the RCS, three individuals substantively employed by the London School of Hygiene and Tropical Medicine (LSHTM) have an honorary contract in place with the RCS to process the requested data for the purposes described within this Agreement.

Both audits regularly meet with their Patient and Carer groups and discuss all the matters related to the content, delivery and impact of the audits. Patient groups are involved in reviewing audit findings, publications and recommendations, to ensure the maximum benefit to the public. Patient groups are also involved in matters related to the collection of data, patients’ opt-outs, data protection and transparency. All audits public-facing materials, such as leaflets, opt-out materials, posters and web pages have been designed in collaboration with patient and carer groups.

The Audit relies on Section 251 Approval to receive confidential patient data without consent, the approvals granted by HRA CAG permit the deferral of the application of the National Data Opt-Out https://www.hqip.org.uk/news/exemptions-to-the-national-data-opt-out/#.ZDZ6MHbMKUk. The National Data Opt-Out deferral help enhance The GICAP’s work in the identification of potential patient safety issues, leading to local improvement activities where necessary.

Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out.

Some of the expected outputs of the processing will be:

• An annual report of findings at the National, Cancer Alliance and NHS Trust level for both NBOCA and NOGCA

• Patient Reports, which are patient-aimed, plain English and abbreviated versions of annual reports

• Submissions to peer-reviewed journals to allow the presentation of the audit methodology and results in more detail than the annual reports.

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 organisation was provided back to the trust upon request to NHS England. The appropriate Section 251 approval is in place to allow the fact of death, in relation to the two mortality indicators, to be shared.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Dedicated websites – NOGCA and NOGCA web pages, HQIP and NCAPOP websites, professional bodies’ (e.g. AUGIS, ACPGBI) pages, data.gov (open data) website,

• Direct emails and newsletters aimed at the data providers, clinical leads, medical directors and other staff involved in or commissioning the audits,

• Professional journals,

• Social media,

• Mail outs to Patient and Carer groups and GI cancer charities, who then cascade information onward and share via their websites and social media

Quality assurance and improvement are among the key objectives of national clinical audits. The two audits within GICAP – NBOCA and NOGCA – evaluate 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 colorectal and 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 GICAP.

NBOCA

1. The analysis of patient data collated and analysed by NBOCA allows monitoring the quality of cancer care, but also highlights variation in practices between NHS organisations. Results of service providers are assessed against the national average as well as quality improvement targets agreed in line with latest recommendations.

The latest NBOCA annual report (2022) highlighted a series of issue related to the variation among cancer care providers. The main issues were the following:

• Regional and institutional variation in the proportion of patients presenting with stage 1 or 2 disease (23% to 48% between regions).

• Proportion of hospitals/trusts/MDTs meeting each local NBOCA QI target has reduced for 7 out of 10 targets during the COVID-19 pandemic compared to the previous year, particularly for the unclosed diverting ileostomy QI target.

• Only 31% of hospitals/trusts/MDTs met the QI target >95% of patients seen by a Clinical Nurse Specialist.

• Only 21% of patients were recorded as having Mismatch Repair (MMR) testing.

• Wide institutional variation in the use of adjuvant chemotherapy.

• 25% of patients receiving adjuvant chemotherapy had severe acute toxicity requiring overnight hospital admission, with wide institutional variation.

• Wide institutional variation in the types of neo-adjuvant chemoradiotherapy for rectal cancer patients.

• 49% of hospitals/trusts/MDTs performed fewer than 20 rectal cancer resections.

• Large increase in the proportion of patients with unclosed diverting ileostomy at 18 months, from 29% in 2015/16 to 47% in 2019/20.

2. On average, approximately 33,000 patients are diagnosed with colorectal cancer each year. Early detection significantly increases patients’ chances of successfully going into remission after treatment. That is why the NBOCA reports evaluate the care pathway around the diagnosis and promote the findings that support early diagnosis and its benefits.

NBOCA findings have shown that patients presenting via screening programmes were more likely to have earlier stage disease, to undergo curative treatment and to have bowel cancer amenable to local resection rather than major surgery. This has led to NBOCA making recommendations of relevance to patients, bowel cancer charities, bowel cancer screening programmes in England and Wales, NHS England and all health professionals – in primary and secondary care settings. These recommendations emphasised:

• The need for campaigning, to raise awareness and educate patients about bowel cancer, particularly with regards to signs and symptoms of bowel cancer and

• The importance of the National Bowel Cancer Screening Programme given its association with more favourable outcomes.

Whilst the work around early detection still continues and changes to public awareness and culture (including breaking the taboo of talking about colorectal cancer symptoms) are far from being widely embedded, the results presented in the latest NBOCA annual report (2021) show small improving trends.

The percentage of patients diagnosed after an emergency presentation had been slowly decreasing, from 20% in 2015/16 to 18% in 2019/20 but the full impact of the COVID-19 pandemic on this percentage has yet to be seen. A slowly improving trend has also shown for the diagnoses following national screening programmes – from 9% in 2015/16 to 12% in 2019/20 and with signs of further increases since then, though the national screening programme was paused during the COVID-19 pandemic so it is difficult to compare this percentage over time.

NOGCA

1. The NOGCA collects data on patients with oesophageal 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 latest annual report (2022), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased from 85 to 92% over a five-year period and the percentage of patients with HGD who had their diagnosis confirmed by a second pathologist increased from 87 to 92%. Similarly, the proportion of patients with a plan for active treatment for HGD increased from 77% among those diagnosed in 2016/17 to 82% among those diagnosed in 2019/20.

2. In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from 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 90.8% among those diagnosed in 2020/21. The proportion of patients with positive circumferential margins has decreased from 26.3% to 19.5%. 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.

The latest NOGCA annual report (2022) has also shown that the use of perioperative chemotherapy has increased among patients undergoing curative surgery for OG cancer. The proportion of surgical patients with a record of chemotherapy increased from 64% in 2016/17 to 72% in 2020/21.

Since the NBOCA has been exempt from applying National Data Opt-out, the team has seen a statistically significant increase in the number of records received. For the period of 8 years – between 2014/15 and 2021/22 – NBOCA have received 9,848 more records for the audit analyses. Following exemption from applying the National Data Opt-out policy, the number of records received by NOGCA for patients diagnosed with oesophago-gastric cancer or oesophageal high-grade dysplasia over a seven year period (2014/15 to 2020/21) increased by 2,455. The benefit derived from deferring the National Data Opt-out policy is that it has provided the audits larger samples sizes, greater opportunity to produce accurate outputs and more confidence in the data accuracy produced from the audits.

NHS England and HQIP as joint data controllers and The Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS) as data processors requires access to National Disease Registration Service (NDRS) data for the purpose of delivering the following audit programme:

National Gastrointestinal Cancer Audit Programme (GICAP).

GICAP comprises the National Bowel Cancer Audit (NBOCA) and the National Oesophago-Gastric Cancer Audit (NOGCA).

The following is a summary of the objectives of the NBOCA:

NBOCA aims to assess the quality of care received by patients with bowel cancer in England and Wales, providing those who commission, deliver and use services for people with colorectal cancer with high-quality data on the process and outcomes of NHS care.

The following is a summary of the objectives of the NOGCA:

NOGCA aims 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.

Both audits respectively undertake case ascertainment work for bowel cancer and oesophago-gastric cancer or oesophageal high-grade dysplasia.

Each audit combines patient records with data from other 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. The Audit aims to supply a rich description of the care process, while also minimising the burden of data collection on clinical staff.

The following NDRS datasets have already been accessed in support of the audit’s aims:

• NDRS Cancer Registrations- allows the Audit to identify patients omitted in the data submitted to the Audit by hospitals, and facilitates the reporting of all patients diagnosed with GI cancers. This will help to further assess the representativeness of patients captured in NBOCA and NOGCA. Such cross-referencing is also intended to assess the extent of possible missing data and identify any patterns relating to this, e.g., geographical areas under-reporting cases or any potential linkage to under-presentation related to social deprivation.

• NDRS Rapid Cancer Registrations- is used as a more up-to-date and more frequent substitute for Cancer Registry, where more timely data is necessary. Rapid Cancer Registrations data, which is routinely linked with RTDS and SACT data sets, provide up-to-date diagnostic, surgical, radiotherapy and systemic treatment data for relevant patients that complements the annual Cancer Registry data. It is one of the programme’s key deliverables to provide accurate and complete quarterly reports to hospitals and Rapid Registrations data is necessary to support this requirement.

• NDRS National Radiotherapy Dataset (RTDS)- Allows the audit to build the full picture of the treatment provided to cancer patients, in-depth analysis of specific regimens and changes to prescribed treatments.

• NDRS Systemic Anti-Cancer Therapy (SACT) Dataset- Allows the audit to build the full picture of the treatment provided to cancer patients, in-depth analysis of specific regimens and changes to prescribed treatments.

The Audit Programme wishes to retain data already held and receive a refresh of the above-listed datasets, in addition to receiving additional Cancer Outcomes and Services Dataset (COSD) items under the Cancer Registrations Products.

The Audit Programme also wishes to request the receipt of the following datasets:

• NDRS Linked Cancer Waiting Times (CWT)- will enable audits to describe patterns of waiting times along the cancer care pathways and validate the dates captured in audit data. CWT data will also provide the audit with details about those referrals for suspected cancer which do not result in a cancer diagnosis and provide a more detailed picture of the care pathway leading up to diagnosis.

• NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC)- required to build a more comprehensive picture of complex patient pathways and outcomes, such as through the capture of readmissions to hospital and complications after treatment, and detailed information about procedures using OPCS codes. Furthermore, HES can be used to identify complex patient groups, such as those with additional diagnoses that contribute to co-morbidity indices and frailty indices, enabling the audits to describe the treatment pathways and outcomes of patient subgroups, understand patterns of treatment variation and ensure appropriate risk adjustment of indicators.

• NDRS Linked Diagnostic Imaging Dataset (DIDS)(NBOCA Only)- will be used to determine the imaging pathways employed in colorectal cancer and associated impact on patient outcomes and the use of neoadjuvant and adjuvant therapy.

• NDRS Somatic Molecular Dataset (NBOCA Only)- Individualised treatment based on the assessment of germline polymorphisms or sporadic abnormalities e.g. mutations occurring in tumour cells, have been key to advances in cancer medicine over the past 20 years. The guidance for molecular testing in colorectal cancer now includes indications to test for various abnormalities as described above. Linking germline and somatic genomic data with audit records will provide a completer and more accurate picture of this part of the patient pathway. It will allow assessment of compliance with National Institute of Health and Care Excellence (NICE) guidance, which recommends a number of molecular assessments as part of standard practice.

• NDRS Cancer Patient Experience Survey (CPES) (NBOCA Only) - The patients and other stakeholders on the NBOCA Clinical Advisory Group have prioritised patient experience as a key measure of care quality, therefore, the linkage of NBOCA data to CPES will be essential to meet that requirement.

The level of the data disseminated will be:

• Pseudonymised

To address the GPDR Principle of Data Minimisation the NHS England CARMS Team and the RCS have had lengthy discussions with the NHS England Data Production Team to develop the data specification. This exercise has ensured that only the minimum amount of data necessary for achieving the purposes described within this DSA is being requested.

The data will be minimised as follows:

• Data is limited to a cohort sent in by the Audit of ~340,000 (~240,000 for NBOCA and ~100,000 for NOGCA) of patients diagnosed between 01/04/2014 and 31/03/2022; and patients aged 18+ who have a diagnosis based on select ICD codes for Bowel and OG Cancer who have not been included in the cohort provided.

• For all patients (i.e. those in the cohort provided, and those who are not in the cohort and have been identified using relevant ICD codes) data is requested from 01/04/2013 (or the latest available record) to the latest available for all data products

• Some datasets are limited to NBOCA only (DIDs, Somatic Molecular, CPES).

The National Gastrointestinal 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). NHS England and HQIP are the joint controllers for the GICAP data, as together both organisations determine the purposes and means of processing.

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 with statutory responsibilities to improve the 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 Schedule 1 Part 1 condition 3 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons on behalf of NHS England.

NHS England relies 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 a contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England is responsible for the provision of health and social care, and the management of systems and compliance. The processing meets Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.

The funding is provided by NHS England via the intermediary of HQIP. The funding is specifically for the audit described and it is in place until 31st December 2023.

The RCS is a processor acting under the instructions of NHS England and HQIP.

Royal College of Surgeons of England (RCS), sub-contracted the then NHS Digital Clinical Audit and Registries Management Service (CARMS) (now NHS England) to assist in delivering the Gastrointestinal (GI) Cancer audit. The CARMS only transfer data to the NDRS team for data linkage purposes. The CARMS do not process any data subsequently released to the data recipient under this Agreement.

Alongside substantive employees of the RCS, three individuals substantively employed by the London School of Hygiene and Tropical Medicine (LSHTM) have an honorary contract in place with the RCS to process the requested data for the purposes described within this Agreement.

Both audits regularly meet with their Patient and Carer groups and discuss all the matters related to the content, delivery and impact of the audits. Patient groups are involved in reviewing audit findings, publications and recommendations, to ensure the maximum benefit to the public. Patient groups are also involved in matters related to the collection of data, patients’ opt-outs, data protection and transparency. All audits public-facing materials, such as leaflets, opt-out materials, posters and web pages have been designed in collaboration with patient and carer groups.

The Audit relies on Section 251 Approval to receive confidential patient data without consent, the approvals granted by HRA CAG permit the deferral of the application of the National Data Opt-Out https://www.hqip.org.uk/news/exemptions-to-the-national-data-opt-out/#.ZDZ6MHbMKUk. The National Data Opt-Out deferral help enhance The GICAP’s work in the identification of potential patient safety issues, leading to local improvement activities where necessary.

Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out.

Some of the expected outputs of the processing will be:

• An annual report of findings at the National, Cancer Alliance and NHS Trust level for both NBOCA and NOGCA

• Patient Reports, which are patient-aimed, plain English and abbreviated versions of annual reports

• Submissions to peer-reviewed journals to allow the presentation of the audit methodology and results in more detail than the annual reports.

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 organisation is then provided back to the trust upon request to the 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.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Dedicated websites – NOGCA and NOGCA web pages, HQIP and NCAPOP websites, professional bodies’ (e.g. AUGIS, ACPGBI) pages, data.gov (open data) website,

• Direct emails and newsletters aimed at the data providers, clinical leads, medical directors and other staff involved in or commissioning the audits,

• Professional journals,

• Social media,

• Mail outs to Patient and Carer groups and GI cancer charities, who then cascade information onward and share via their websites and social media

Annual reports for 2023 are due to be published in December 2023. Patient Reports will follow in quick succession (December ’23 for NBOCA, February ’24 for NOGCA). Other communications’ timelines will depend on specific requirements and appropriate approval processes.

Quality assurance and improvement are among the key objectives of national clinical audits. The two audits within GICAP – NBOCA and NOGCA – evaluate 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 colorectal and 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 GICAP.

NBOCA

1. The analysis of patient data collated and analysed by NBOCA allows monitoring the quality of cancer care, but also highlights variation in practices between NHS organisations. Results of service providers are assessed against the national average as well as quality improvement targets agreed in line with latest recommendations.

The latest NBOCA annual report (2022) highlighted a series of issue related to the variation among cancer care providers. The main issues were the following:

• Regional and institutional variation in the proportion of patients presenting with stage 1 or 2 disease (23% to 48% between regions).

• Proportion of hospitals/trusts/MDTs meeting each local NBOCA QI target has reduced for 7 out of 10 targets during the COVID-19 pandemic compared to the previous year, particularly for the unclosed diverting ileostomy QI target.

• Only 31% of hospitals/trusts/MDTs met the QI target >95% of patients seen by a Clinical Nurse Specialist.

• Only 21% of patients were recorded as having Mismatch Repair (MMR) testing.

• Wide institutional variation in the use of adjuvant chemotherapy.

• 25% of patients receiving adjuvant chemotherapy had severe acute toxicity requiring overnight hospital admission, with wide institutional variation.

• Wide institutional variation in the types of neo-adjuvant chemoradiotherapy for rectal cancer patients.

• 49% of hospitals/trusts/MDTs performed fewer than 20 rectal cancer resections.

• Large increase in the proportion of patients with unclosed diverting ileostomy at 18 months, from 29% in 2015/16 to 47% in 2019/20.

2. On average, approximately 33,000 patients are diagnosed with colorectal cancer each year. Early detection significantly increases patients’ chances of successfully going into remission after treatment. That is why the NBOCA reports evaluate the care pathway around the diagnosis and promote the findings that support early diagnosis and its benefits.

NBOCA findings have shown that patients presenting via screening programmes were more likely to have earlier stage disease, to undergo curative treatment and to have bowel cancer amenable to local resection rather than major surgery. This has led to NBOCA making recommendations of relevance to patients, bowel cancer charities, bowel cancer screening programmes in England and Wales, NHS England and all health professionals – in primary and secondary care settings. These recommendations emphasised:

• The need for campaigning, to raise awareness and educate patients about bowel cancer, particularly with regards to signs and symptoms of bowel cancer and

• The importance of the National Bowel Cancer Screening Programme given its association with more favourable outcomes.

Whilst the work around early detection still continues and changes to public awareness and culture (including breaking the taboo of talking about colorectal cancer symptoms) are far from being widely embedded, the results presented in the latest NBOCA annual report (2021) show small improving trends.

The percentage of patients diagnosed after an emergency presentation had been slowly decreasing, from 20% in 2015/16 to 18% in 2019/20 but the full impact of the COVID-19 pandemic on this percentage has yet to be seen. A slowly improving trend has also shown for the diagnoses following national screening programmes – from 9% in 2015/16 to 12% in 2019/20 and with signs of further increases since then, though the national screening programme was paused during the COVID-19 pandemic so it is difficult to compare this percentage over time.

NOGCA

1. The NOGCA collects data on patients with oesophageal 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 latest annual report (2022), NOGCA demonstrated that the proportion of patients with HGD who are discussed at a specialist MDT meeting has increased from 85 to 92% over a five-year period and the percentage of patients with HGD who had their diagnosis confirmed by a second pathologist increased from 87 to 92%. Similarly, the proportion of patients with a plan for active treatment for HGD increased from 77% among those diagnosed in 2016/17 to 82% among those diagnosed in 2019/20.

2. In 2017, the audit first published information on surgical pathology indicators that were derived from recommendations in national guidance from 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 90.8% among those diagnosed in 2020/21. The proportion of patients with positive circumferential margins has decreased from 26.3% to 19.5%. 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.

The latest NOGCA annual report (2022) has also shown that the use of perioperative chemotherapy has increased among patients undergoing curative surgery for OG cancer. The proportion of surgical patients with a record of chemotherapy increased from 64% in 2016/17 to 72% in 2020/21.

Since the NBOCA has been exempt from applying National Data Opt-out, the team has seen a statistically significant increase in the number of records received. For the period of 8 years – between 2014/15 and 2021/22 – NBOCA have received 9,848 more records for the audit analyses. Following exemption from applying the National Data Opt-out policy, the number of records received by NOGCA for patients diagnosed with oesophago-gastric cancer or oesophageal high-grade dysplasia over a seven year period (2014/15 to 2020/21) increased by 2,455. The benefit derived from deferring the National Data Opt-out policy is that it has provided the audits larger samples sizes, greater opportunity to produce accurate outputs and more confidence in the data accuracy produced from the audits.

The Gastrointestinal Cancer Audit Programme (GICAP) comprises the National Bowel Cancer Audit (NBOCA) and the National Oesophago-Gastric Cancer Audit (NOGCA). This application relates to both GICAP workstreams.

This application is to request the renewal of data previously provided under the agreement with the Public Health England (PHE) Office for Data Release (ODR)(ref. ODR1819_260).

The National Gastrointestinal 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). NHS England and HQIP are the joint data controllers for the GICAP data, as together both organisations determine the purposes and means of processing.

In early 2018 a contract was awarded by HQIP to the Royal College of Surgeons of England (RCS), who in turn sub-contracted NHS Digital (the Health and Social Care Information Centre (HSCIC)) to deliver the Gastrointestinal (GI) Cancer audit - initially for 3 years - until 31st May 2021, then the contract has been extended to May 2023. The RCS is the data processor contracted by HQIP to undertake the analysis of the data requested under this Agreement to support the Audit.

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 in specification development, procurement and project extension activities and authorises the publication of project outputs.

NHS England is also involved in developing the scope and purpose of the GICAP project through participation in 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 is represented on the HQIP Data access request group which authorises data sharing applications from third parties. This Agreement does not permit the Data Controllers to further disseminate NHS Digital data, any further dissemination would be subject to a separate DSA, with appropriate REC support (if required).

The Clinical Effectiveness Unit (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.

Bowel cancer is the third most common malignancy in the UK with approximately 33,000 people diagnosed with the disease each year. Oesophago-gastric cancer is the fifth most common malignancy and affects approximately 13,500 people each year.

NBOCA aims to assess the quality of care received by patients with bowel cancer in England and Wales, providing those who commission, deliver and use services for people with colorectal cancer with high-quality data on the process and outcomes of NHS care.

The Oesophago-Gastric Cancer Audit aims 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.

Both audits respectively undertake case ascertainment work for bowel cancer and oesophago-gastric cancer or oesophageal high-grade dysplasia.

The audits are based on prospectively collected, patient-level data and collectively cover patients diagnosed with colorectal cancer and patients diagnosed with invasive epithelial oesophago-gastric cancer or oesophageal high-grade dysplasia, in England and Wales. Each audit 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 aim to minimise the burden of data collection on clinical staff.

To support the delivery of NBOCA and NOGCA, the Clinical Audits and Registries Management Service (CARMS) within NHS Digital requests National Cancer Registrations and Analysis Service (NCRAS) data on behalf of NHS England and HQIP. There are no other reasonable means for the data processors to achieve their purpose that is less intrusive to the data subjects.

The following data sets, from the NCRAS portfolio, are processed by GI audits. This DSA permits the GICAP Audits to receive a refresh of the below-listed datasets:

- Pseudonymised NDRS Cancer Registry - Provision of this data set allows the Audit to identify patients omitted in the data submitted by hospitals directly to the CARMS team at NHS Digital. This allows reporting on the complete set of patients diagnosed with GI cancers. This will help to further assess the representativeness of patients captured in NBOCA and NOGCA. Such cross-referencing is also intended not only to assess the extent of possible missing data but to identify any patterns relating to this, e.g., particular geographical areas under-reporting cases or any potential linkage to under-presentation related to social deprivation.

- Pseudonymised NDRS Rapid Cancer Registrations - This data set, although known for its data quality issues, is used as a more up-to-date and more frequent substitute for Cancer Registry, where more timely data is necessary. Rapid Cancer Registrations data, which is routinely linked with RTDS and SACT data sets, provide up-to-date diagnostic, surgical, radiotherapy and systemic treatment data for the cohort of GICAP patients that complements the annual Cancer Registry data.

- Pseudonymised NDRS Radiotherapy Data Set (RTDS) and NDRS Systemic Anti-Cancer Therapy (SACT) - These data sets, holding information on patients treated with radio- or chemotherapy, allow the audit build the full picture of the treatment provided to cancer patients, in-depth analysis of specific regimens and changes to prescribed treatments. It allows the exploration of whether the radiotherapy and chemotherapy data items, collected by the Audits from hospitals, are appropriate and necessary. Should particular data be available in existing, national data sets, these data items could be removed from the data collection, to ease the burden on data providers (hospital staff).

To address the GPDR Principle of Data Minimisation the NHS Digital CARMS Team and the RCS have had lengthy discussions with the NHS Digital Data Production Team to develop the data specification. This exercise has ensured that only the minimum amount of data necessary for achieving the purposes described within this DSA is being requested.

The cohort is limited to ~300,000 individuals who have been diagnosed with bowel cancer or oesophago-gastric cancer that the Audit is aware of, as well as any patients that have a diagnosis based on a selection of ICD-10 codes that the Audit was not already aware of. National data is required to ensure that national and local trends can be identified. This request is deemed to be compliant with the NHS Digital Standard for Data Minimisation.

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 the 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 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 relies 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 is responsible for the provision of health and social care, and the management of systems and compliance. The processing meets Schedule 1 Part 1 paragraph 2 of the Data Protection Act 2018 as the processing is carried out by the Royal College of Surgeons.

The outputs produced by GICAP are the deliverables contracted as part of the audit process commissioned by HQIP.

The GICAP programme measures the quality of care received by patients diagnosed with bowel and OG cancer within NHS services in England and Wales. It is designed to evaluate the care pathways followed by patients once they have been diagnosed with cancer and to assess outcomes. The GI audits also provide national and trust-level outcomes on end-of-life care.

The outputs are reported at National, Cancer Alliance and NHS Trust level. Examples of specific statistical outputs are:

- Percentage of patients with surgical intent

- Percentage of patients with complications

- Risk adjusted 90-day post-operative mortality

- Risk adjusted 2-year mortality

- Risk adjusted complication rate

- Percentage of adequate lymph node resections

- Percentage of positive resection margin

- Length of stay

- Percentage of unplanned readmissions

The audits also look into the feasibility of using information reported by patients themselves about the experience of their cancer care e.g., symptoms, functional status and quality of life.

The results produced by the Audit teams 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 audiences are people who deliver, receive, commission and regulate bowel and 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.

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 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 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 professional bodies' websites.

Annual reports are presented at the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS), the British Society of Gastroenterology (BSG) and the Association of Coloproctology of Great Britain and Ireland (ACPGBI) annual meetings as a minimum and at other events, as appropriate.

All reports are written in plain language, to make them understandable to lay readers. However, to increase their accessibility, both audits also publish Patient Reports, which are patient-aimed, plain English and abbreviated versions of Annual Reports. The RCS 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.

Publications in peer-reviewed journals allow presentation of the audits methodology and results in more detail than in the Annual Reports.

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.

Quality assurance and improvement are among the key objectives of national clinical audits. The two audits within GICAP – NBOCA and NOGCA – evaluate 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 colorectal and 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 GICAP.

NBOCA

1.The analysis of patient data collated and analysed by NBOCA over the last 12 years has resulted in a series of key recommendations for cancer service, commissioners and policymakers. These recommendations have been supported by the Association of Coloproctology of Great Britain and Ireland (ACGBI) and fed into updates to NICE guidance on bowel cancer. As an example, NBOCA developed a novel method for reporting on chemotherapy regimens using English SACT and English HES/ Welsh PEDW routine data. This allowed NBOCA to report rates of adjuvant chemotherapy in stage III colon cancer patients by NHS trust in both England and Wales, despite the lack of SACT data in Wales. This led to a recommendation that the NHS services review and ensure evidence-based local policies for offering adjuvant chemotherapy to people following major resection for pathological stage III colon cancer. NBOCA also established a quality improvement initiative to focus on improving cancer outcomes among patients with stage III colon cancer who received adjuvant chemotherapy because there was considerable variation in practice across England and Wales.

As a result of this work, the Audit was able to demonstrate improvement in this aspect of care in the latest NBOCA annual report (2021). Among patients diagnosed between April 2019 and March 2020, 61% of those undergoing major resection for stage III colon cancer receiving adjuvant chemotherapy. This is an increase from 54% for patients diagnosed in 2016/17. In addition, the variation between NHS trusts in the proportion of these patients receiving adjuvant chemotherapy has reduced, with the number of organisations with patterns of care outside the expected range falling from 27 in 2015/16 to 21 in 2019/20.

2.On average, approximately 33,000 patients are diagnosed with colorectal cancer each year. Early detection significantly increases patients’ chances of successfully going into remission after treatment. That is why the NBOCA reports evaluate the care pathway around the diagnosis and promote the findings that support early diagnosis and its benefits.

NBOCA findings have shown that patients presenting via screening programmes were more likely to have earlier stage disease, to undergo curative treatment and to have bowel cancer amenable to local resection rather than major surgery. This has led to NBOCA making recommendations of relevance to patients, bowel cancer charities, bowel cancer screening programmes in England and Wales, NHS England and all health professionals – in primary and secondary care settings. These recommendations emphasised:

• The need for campaigning, to raise awareness and educate patients about bowel cancer, particularly with regards to signs and symptoms of bowel cancer and

• The importance of the National Bowel Cancer Screening Programme given its association with more favourable outcomes.

Whilst the work around early detection still continues and changes to public awareness and culture (including breaking the taboo of talking about colorectal cancer symptoms) are far from being widely embedded, the results presented in the latest NBOCA annual report (2021) show small improving trends. The percentage of patients diagnosed after an emergency presentation has been slowly decreasing, from 20% in 2015/16 to 18% in 2019/20. A slowly improving trend has also shown for the diagnoses following national screening programmes – from 9% in 2015/16 to 12% in 2019/20.

NOGCA

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 latest 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 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.