PEUGIC root cause analysis project
Sandwell and West Birmingham Hospitals NHS Trust · NHS Trust
In term In term in the September 2026 edition: the latest version runs to 30 June 2028.
- Reference
- DARS-NIC-719879-K6X3J
- Current version
- v2.3
- Term of current version
- 2 May 2025 to 30 June 2028
- Start date
- 10 November 2023
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 3
Why the data was released
Objective for processing
Sandwell and West Birmingham Hospitals NHS Trust require access to NHS England National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) data for the purpose of the following project: Post Endoscopy Upper Gastro-Intestinal Cancer (PEUGIC) root cause analysis project.
The following is a summary of the aims, and of how the project plans to use data requested under this Agreement:
• To identify all PEUGIC patients in England. Patients diagnosed with upper GI Cancer from 2017 onwards who had an endoscopy 3-36 months prior to cancer diagnosis
• Develop a secure online portal that provides each Trust with details on their PEUGIC which also provides access to a root cause analysis form.
• Pooling/Anonymisation of national data collected in root cause analysis form, to better understand the main causes of PEUGIC nationally.
• Sharing of findings to outline areas for quality improvement, to reduce the number of PEUGIC cases nationally.
The researchers at Sandwell and West Birmingham Hospitals NHS Trust will use collated, non-identifiable NCRAS data from the national post endoscopy upper gastrointestinal cancer (PEUGIC) root cause analysis project, involving approximately 3000 PEUGIC.
Previous pilot work in two trusts has suggested that 70% of PEUGIC are potentially avoidable (Kamran 2022). During trust local root cause analysis, it will be established whether the PEUGIC was potentially avoidable. The researchers will assess from data collected a number of potential contributory factors to potentially avoidable PEUGIC including: sub-optimal endoscopic pre-medication practices (e.g. not using sedation and the endoscopy is poorly tolerated); failure to follow national and international recommendations on best practice on lesion management during endoscopy (e.g. taking inadequate numbers of biopsies) and following endoscopy (e.g. were follow up or surveillance plans adequate); and contribution from delays in follow up or surveillance procedures due to administrative issues. The analyses undertaken will be descriptive. This is the first time anywhere in the world that such an analysis has been undertaken.
To help achieve these objectives both national level data and data from local NHS Trusts are utilised to feed into the research. Therefore the following NHS England NDRS data will be accessed:
• NDRS Cancer Registrations- including PEUGIC data.
This data will be received on three separate occasions across the first year of the DSA only.
The level of the data will be pseudonymised.
The data will be minimised as follows:
• Limited to a study cohort identified by NHS England as meeting the following criteria: over 18s diagnosed with Upper GI Cancer who had an endoscopy 3-36 months before diagnosis.
• Limited to data between 2015 onwards
• Limited to patients diagnosed in England
Sandwell and West Birmingham Hospitals NHS Trust is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK General Data Protection Regulation (GDPR is as follows:
Article 6(1)(e) - 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;
The lawful basis for processing special category personal data under the UK GDPR is:
Article 9(2)(i)- This processing is in the public interest in the area of public health because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by the National Institute of Health and Care Research (NIHR) – Research for Patient Benefit Programme. The funding is specifically for the project described and the funders will have no ability to suppress or otherwise limit the publication of findings.
The University of Birmingham is a processor acting under the instructions of Sandwell and West Birmingham Hospitals NHS Trust. University of Birmingham’s role is limited to providing advice on the appropriate statistical analysis for the data, which means University of Birmingham employees require access to the raw data to assist Sandwell and West Birmingham Hospitals NHS Trust.
The project has an oversight committee made up of consultants from several NHS Trusts, and patient representatives are provided by relevant charities (i.e. Heartburn Cancer UK). Additionally, 10 professionals are involved with the project as co investigators including Gastroenterologists and General Surgeons. The project has been through each NHS trust that has taken part in the project and where trust project leads were asked to send out summary information on the project to all colleagues undertaking endoscopy for transparency, which included use of GMC/NMC numbers within the project. No concerns were raised by the 130 Trusts who took part.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above. A representative from Heartburn Cancer UK has also been involved in submitting grant applications and developing the project aims and has contributed to steering committee meetings.
Processing activities
NHS England will provide the relevant records from the NDRS Cancer Registration dataset, including the PEUGIC data items. The PEUGIC root cause analysis data items are submitted by NHS Trusts through an NDRS secure online portal which is Data Protection and Security Toolkit (DPST) approved. The portal is pre-populated with limited cancer registry data on the PEUGIC patients (e.g. cancer site, morphology, staging) to facilitate the root cause analysis. PEUGIC data items submitted by NHS trusts and the linked limited cancer registry dataset are sent directly into the PEUGIC tables which are held in NCRAS. The research team will also receive non-identifiable NCRAS data on treatment received by PEUGIC patients when receiving PEUGIC tables. This data may not be available to clinicians completing the local root cause analysis, e.g. if the patient received treatment at another trust.
The research team will also receive identifiable General Medical Council (GMC) and Nursing and Midwifery Council (NMC) numbers for endoscopists. Out of the 2500 PEUGIC, or potentially missed UGI cancers the study team have analysed, there will be some PEUGIC subtypes involving hundreds of endoscopists. The researchers want to look at the National Endoscopy Database data of these endoscopists, compared with all other endoscopists in the UK. An example would be PEUGIC associated with gastric ulcers. Researchers want to compare the number of biopsies taken from ulcers in the National Endoscopy Database by the endoscopists associated with these PEUGIC, in comparison with other endoscopists, The research team would group these endoscopists associated with these PEUGIC in the national endoscopy database data by their GMC/NMC numbers (without identifying them) and look at how many biopsies they take as a group on average from any gastric ulcer. This will enable the research team to see if the PEUGIC endoscopists are taking less biopsies, therefore needing to educate all endoscopists on the importance of taking sufficient biopsies to avoid missing cancer when there is a gastric ulcer. PEUGIC is too rare an event to provide a measure of individual practice and the research team will not use this data to identify individual endoscopists. GMC and NMC numbers will allow linkage at endoscopist level of the occurrence of PEUGIC with measures of endoscopy performance in the National Endoscopy Database, to allow for the first time evidence based key performance indicators (KPI) to be generated for upper GI endoscopy (researchers will not be identifying individuals and will not do this or analyse, present or publish KPI data at an individual level). The National Endoscopy Database contains no patient identifiers.
The data disseminated under this agreement will contain no direct patient identifying data items and once in receipt of the data it will not be transferred to any other location.
The data will be stored on servers at Sandwell and West Birmingham Hospitals NHS Trust and the University of Birmingham, all back-ups are stored on-site.
The data will be accessed onsite at the premises of Sandwell and West Birmingham Hospital NHS Trust and University of Birmingham, or via remote access. Where remote access is being used the data will remain on the servers at Sandwell and West Birmingham Hospitals NHS Trust and University of Birmingham at all times.
Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.
All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA))
The data will not leave or be accessed outside of England at any time.
Access is restricted to Sandwell and West Birmingham Hospitals NHS Trust and University of Birmingham employees who have authorisation from the Principal Investigator.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
The data will be linked with the National Endoscopy Database (NED) obtained from the Joint Advisory Group (JAG) on GI endoscopy based at the Royal College of Physicians.
There will be no requirement or attempt to reidentify individuals when using the data.
Analysts from the Sandwell and West Birmingham Hospitals NHS Trust will process the data for the purposes described above.
Expected output
The expected outputs of the processing will be:
• A report of findings to NHS endoscopy units- provided directly or through engagement/presentation. Communication of findings aims to include a Standard Operating Procedure (SOP) for endoscopy quality improvement. This has been produced and disseminated earlier in the year.
• Submissions to peer-reviewed journals estimated October 2025. Submissions will be made to appropriate journals.
• Presentations at National Endoscopy meetings and other relevant conferences.
The outputs will not contain NHS England data. They will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops involving NHS endoscopy units.
• Webinars open to NHS endoscopy units.
• Social media- The project has intentions to set up its own Twitter account, but will also disseminate key findings via the Heartburn Cancer UK Twitter account
Outputs are expected to be generated from 2023 onwards and over the term of the agreement.
Expected measurable benefits
The findings of this research study are expected to contribute to evidence-based decision-making for local decision-makers such as doctors to inform best practices to improve the care, treatment and experience of healthcare users relevant to the subject matter of the study.
The findings also have the potential to reduce the number of missed upper GI Cancer diagnoses at endoscopy (which is the main route to diagnosis). Earlier diagnosis has been shown to lead to better patient outcomes.
It is hoped that through the publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making decisions for or within the NHS or treatment decisions in relation to specific patients.
To maximise the potential public benefits the project aims to advertise their findings to a wider audience, making use of connections to Heartburn Cancer UK, the NIHR, the Royal College of Physician JAG on GI endoscopy, the Association of Upper Gastrointestinal Surgery of Great Britain and Ireland (AUGIS), the British Society of Gastroenterology (BSG) and other Endoscopy related institutes.
Benefits reported so far
The study has identified the main reasons why cancers are not detected at endoscopy and procedural risk factors which cause cancer to be missed. This is highlighted reports sent to endoscopy providers. Therefore, the study team are hopeful with that knowledge, less cancers will be missed.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| NDRS Cancer Registrations | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
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 not applied to any of the 3 files released under this agreement, across every version. About opt-outs
No files recorded as released under the current version. 3 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 3 versions.
DARS-NIC-719879-K6X3J-v2.3 2 May 2025 to 30 June 2028
- Title
- PEUGIC root cause analysis project
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 0
Datasets: NDRS Cancer Registrations
What changed from DARS-NIC-719879-K6X3J-v1.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-05-02 |
Objective for processing
[22 paragraphs unchanged]
The University of Birmingham is a processor acting under the instructions of Sandwell and West Birmingham Hospitals NHS Trust. University of Birmingham’s role is limited to providing advice on the appropriate statistical analysis for the data, which means University of Birmingham employees require access to the raw data to assist Sandwell and West Birmingham Hospitals NHS Trust.
[2 paragraphs unchanged]
In line with the National data opt-out policy, opt-outs are not applied because the data is not Confidential Patient Information as defined in sections 251(10) and (11) of the National Health Service Act 2006.
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.
Processing activities
[3 paragraphs unchanged]
The data will be stored on servers at Sandwell and West Birmingham Hospitals NHS
Trust,
Trust and the University of Birmingham,
all back-ups are stored on-site.
The data will be accessed onsite at the premises of Sandwell and West Birmingham Hospital NHS
Trust,
Trust and University of Birmingham,
or via remote access. Where remote access is being used the data will remain on the servers at Sandwell and West Birmingham Hospitals NHS Trust
and University of Birmingham
at all times.
[7 paragraphs unchanged]
Access is restricted to Sandwell and West Birmingham Hospitals NHS Trust
and University of Birmingham
employees who have authorisation from the Principal Investigator.
[4 paragraphs unchanged]
Expected output
[1 paragraph unchanged]
• A report of findings to NHS endoscopy units- provided directly or
[5 words unchanged]
aims to include a Standard Operating Procedure (SOP) for endoscopy quality improvement.
This has been produced and disseminated earlier in the year.
• Submissions to peer-reviewed journals estimated
September 2024.
October 2025.
Submissions will be made to appropriate journals.
[8 paragraphs unchanged]
Benefits reported
Not stated in the previous version; added here.
The study has identified the main reasons why cancers are not detected at endoscopy and procedural risk factors which cause cancer to be missed. This is highlighted reports sent to endoscopy providers. Therefore, the study team are hopeful with that knowledge, less cancers will be missed.
Unchanged: Expected measurable benefits.
DARS-NIC-719879-K6X3J-v1.2 1 July 2024 to 30 June 2028
- Title
- PEUGIC root cause analysis project
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 2
Datasets: NDRS Cancer Registrations
What changed from DARS-NIC-719879-K6X3J-v0.9
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2024-07-01 | |
| End date | 2028-06-30 |
Objective for processing
[22 paragraphs unchanged] The project has an oversight committee made up of consultants from several NHS Trusts, and patient representatives are provided by relevant charities (i.e. Heartburn Cancer UK). Additionally, 10 professionals are involved with the project as co investigators including Gastroenterologists and General Surgeons. The project has been through each NHS trust that has taken part in the project and where trust project leads were asked to send out summary information on the project to all colleagues undertaking endoscopy for transparency, which included use of GMC/NMC numbers within the project. No concerns were raised by the 130 Trusts who took part. [3 paragraphs unchanged]
Processing activities
NHS England will provide the relevant records from the NDRS Cancer Registration dataset, including the PEUGIC data items. The PEUGIC root
causes
cause
analysis data items are submitted by NHS Trusts through an NDRS secure
[91 words unchanged]
root cause analysis, e.g. if the patient received treatment at another trust.
The data disseminated under this agreement will contain no direct identifying data items and
The research team will also receive identifiable General Medical Council (GMC) and Nursing and Midwifery Council (NMC) numbers for endoscopists. Out of the 2500 PEUGIC, or potentially missed UGI cancers the study team have analysed, there will be some PEUGIC subtypes involving hundreds of endoscopists. The researchers want to look at the National Endoscopy Database data of these endoscopists, compared with all other endoscopists in the UK. An example would be PEUGIC associated with gastric ulcers. Researchers want to compare the number of biopsies taken from ulcers in the National Endoscopy Database by the endoscopists associated with these PEUGIC, in comparison with other endoscopists, The research team would group these endoscopists associated with these PEUGIC in the national endoscopy database data by their GMC/NMC numbers (without identifying them) and look at how many biopsies they take as a group on average from any gastric ulcer. This will enable the research team to see if the PEUGIC endoscopists are taking less biopsies, therefore needing to educate all endoscopists on the importance of taking sufficient biopsies to avoid missing cancer when there is a gastric ulcer. PEUGIC is too rare an event to provide a measure of individual practice and the research team will not use this data to identify individual endoscopists. GMC and NMC numbers will allow linkage at endoscopist level of the occurrence of PEUGIC with measures of endoscopy performance in the National Endoscopy Database, to allow for the first time evidence based key performance indicators (KPI) to be generated for upper GI endoscopy (researchers will not be identifying individuals and will not do this or analyse, present or publish KPI data at an individual level). The National Endoscopy Database contains no patient identifiers.
The data disseminated under this agreement will contain no direct patient identifying data items and
once in receipt of the data it will not be transferred to any other location.
[14 paragraphs unchanged]
Benefits reported
Stated in the previous version and removed here.
Yielded Benefits is not a requirement for new applications.
Unchanged: Expected output, Expected measurable benefits.
Objective for processing
Sandwell and West Birmingham Hospitals NHS Trust require access to NHS England National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) data for the purpose of the following project: Post Endoscopy Upper Gastro-Intestinal Cancer (PEUGIC) root cause analysis project.
The following is a summary of the aims, and of how the project plans to use data requested under this Agreement:
• To identify all PEUGIC patients in England. Patients diagnosed with upper GI Cancer from 2017 onwards who had an endoscopy 3-36 months prior to cancer diagnosis
• Develop a secure online portal that provides each Trust with details on their PEUGIC which also provides access to a root cause analysis form.
• Pooling/Anonymisation of national data collected in root cause analysis form, to better understand the main causes of PEUGIC nationally.
• Sharing of findings to outline areas for quality improvement, to reduce the number of PEUGIC cases nationally.
The researchers at Sandwell and West Birmingham Hospitals NHS Trust will use collated, non-identifiable NCRAS data from the national post endoscopy upper gastrointestinal cancer (PEUGIC) root cause analysis project, involving approximately 3000 PEUGIC.
Previous pilot work in two trusts has suggested that 70% of PEUGIC are potentially avoidable (Kamran 2022). During trust local root cause analysis, it will be established whether the PEUGIC was potentially avoidable. The researchers will assess from data collected a number of potential contributory factors to potentially avoidable PEUGIC including: sub-optimal endoscopic pre-medication practices (e.g. not using sedation and the endoscopy is poorly tolerated); failure to follow national and international recommendations on best practice on lesion management during endoscopy (e.g. taking inadequate numbers of biopsies) and following endoscopy (e.g. were follow up or surveillance plans adequate); and contribution from delays in follow up or surveillance procedures due to administrative issues. The analyses undertaken will be descriptive. This is the first time anywhere in the world that such an analysis has been undertaken.
To help achieve these objectives both national level data and data from local NHS Trusts are utilised to feed into the research. Therefore the following NHS England NDRS data will be accessed:
• NDRS Cancer Registrations- including PEUGIC data.
This data will be received on three separate occasions across the first year of the DSA only.
The level of the data will be pseudonymised.
The data will be minimised as follows:
• Limited to a study cohort identified by NHS England as meeting the following criteria: over 18s diagnosed with Upper GI Cancer who had an endoscopy 3-36 months before diagnosis.
• Limited to data between 2015 onwards
• Limited to patients diagnosed in England
Sandwell and West Birmingham Hospitals NHS Trust is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK General Data Protection Regulation (GDPR is as follows:
Article 6(1)(e) - 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;
The lawful basis for processing special category personal data under the UK GDPR is:
Article 9(2)(i)- This processing is in the public interest in the area of public health because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by the National Institute of Health and Care Research (NIHR) – Research for Patient Benefit Programme. The funding is specifically for the project described and the funders will have no ability to suppress or otherwise limit the publication of findings.
The project has an oversight committee made up of consultants from several NHS Trusts, and patient representatives are provided by relevant charities (i.e. Heartburn Cancer UK). Additionally, 10 professionals are involved with the project as co investigators including Gastroenterologists and General Surgeons. The project has been through each NHS trust that has taken part in the project and where trust project leads were asked to send out summary information on the project to all colleagues undertaking endoscopy for transparency, which included use of GMC/NMC numbers within the project. No concerns were raised by the 130 Trusts who took part.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above. A representative from Heartburn Cancer UK has also been involved in submitting grant applications and developing the project aims and has contributed to steering committee meetings.
In line with the National data opt-out policy, opt-outs are not applied because the data is not Confidential Patient Information as defined in sections 251(10) and (11) of the National Health Service Act 2006.
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.
Expected output
The expected outputs of the processing will be:
• A report of findings to NHS endoscopy units- provided directly or through engagement/presentation. Communication of findings aims to include a Standard Operating Procedure (SOP) for endoscopy quality improvement.
• Submissions to peer-reviewed journals estimated September 2024. Submissions will be made to appropriate journals.
• Presentations at National Endoscopy meetings and other relevant conferences.
The outputs will not contain NHS England data. They will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops involving NHS endoscopy units.
• Webinars open to NHS endoscopy units.
• Social media- The project has intentions to set up its own Twitter account, but will also disseminate key findings via the Heartburn Cancer UK Twitter account
Outputs are expected to be generated from 2023 onwards and over the term of the agreement.
DARS-NIC-719879-K6X3J-v0.9 10 November 2023 to 9 November 2026
- Title
- PEUGIC root cause analysis project
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 1
Datasets: NDRS Cancer Registrations
Objective for processing
Sandwell and West Birmingham Hospitals NHS Trust require access to NHS England National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) data for the purpose of the following project: Post Endoscopy Upper Gastro-Intestinal Cancer (PEUGIC) root cause analysis project.
The following is a summary of the aims, and of how the project plans to use data requested under this Agreement:
• To identify all PEUGIC patients in England. Patients diagnosed with upper GI Cancer from 2017 onwards who had an endoscopy 3-36 months prior to cancer diagnosis
• Develop a secure online portal that provides each Trust with details on their PEUGIC which also provides access to a root cause analysis form.
• Pooling/Anonymisation of national data collected in root cause analysis form, to better understand the main causes of PEUGIC nationally.
• Sharing of findings to outline areas for quality improvement, to reduce the number of PEUGIC cases nationally.
The researchers at Sandwell and West Birmingham Hospitals NHS Trust will use collated, non-identifiable NCRAS data from the national post endoscopy upper gastrointestinal cancer (PEUGIC) root cause analysis project, involving approximately 3000 PEUGIC.
Previous pilot work in two trusts has suggested that 70% of PEUGIC are potentially avoidable (Kamran 2022). During trust local root cause analysis, it will be established whether the PEUGIC was potentially avoidable. The researchers will assess from data collected a number of potential contributory factors to potentially avoidable PEUGIC including: sub-optimal endoscopic pre-medication practices (e.g. not using sedation and the endoscopy is poorly tolerated); failure to follow national and international recommendations on best practice on lesion management during endoscopy (e.g. taking inadequate numbers of biopsies) and following endoscopy (e.g. were follow up or surveillance plans adequate); and contribution from delays in follow up or surveillance procedures due to administrative issues. The analyses undertaken will be descriptive. This is the first time anywhere in the world that such an analysis has been undertaken.
To help achieve these objectives both national level data and data from local NHS Trusts are utilised to feed into the research. Therefore the following NHS England NDRS data will be accessed:
• NDRS Cancer Registrations- including PEUGIC data.
This data will be received on three separate occasions across the first year of the DSA only.
The level of the data will be pseudonymised.
The data will be minimised as follows:
• Limited to a study cohort identified by NHS England as meeting the following criteria: over 18s diagnosed with Upper GI Cancer who had an endoscopy 3-36 months before diagnosis.
• Limited to data between 2015 onwards
• Limited to patients diagnosed in England
Sandwell and West Birmingham Hospitals NHS Trust is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK General Data Protection Regulation (GDPR is as follows:
Article 6(1)(e) - 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;
The lawful basis for processing special category personal data under the UK GDPR is:
Article 9(2)(i)- This processing is in the public interest in the area of public health because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by the National Institute of Health and Care Research (NIHR) – Research for Patient Benefit Programme. The funding is specifically for the project described and the funders will have no ability to suppress or otherwise limit the publication of findings.
The project has an oversight committee made up of consultants from several NHS Trusts, and patient representatives are provided by relevant charities (i.e. Heartburn Cancer UK).
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group strongly supported the collection of the data for the purposes described above. A representative from Heartburn Cancer UK has also been involved in submitting grant applications and developing the project aims and has contributed to steering committee meetings.
In line with the National data opt-out policy, opt-outs are not applied because the data is not Confidential Patient Information as defined in sections 251(10) and (11) of the National Health Service Act 2006.
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.
Expected output
The expected outputs of the processing will be:
• A report of findings to NHS endoscopy units- provided directly or through engagement/presentation. Communication of findings aims to include a Standard Operating Procedure (SOP) for endoscopy quality improvement.
• Submissions to peer-reviewed journals estimated September 2024. Submissions will be made to appropriate journals.
• Presentations at National Endoscopy meetings and other relevant conferences.
The outputs will not contain NHS England data. They will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops involving NHS endoscopy units.
• Webinars open to NHS endoscopy units.
• Social media- The project has intentions to set up its own Twitter account, but will also disseminate key findings via the Heartburn Cancer UK Twitter account
Outputs are expected to be generated from 2023 onwards and over the term of the agreement.
Benefits reported
Yielded Benefits is not a requirement for new applications.
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.
-
December 2023 —
first listed. 1 version: DARS-NIC-719879-K6X3J-v0.9
-
August 2024
1 version added: DARS-NIC-719879-K6X3J-v1.2
-
July 2025
1 version added: DARS-NIC-719879-K6X3J-v2.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-719879-K6X3J, “PEUGIC root cause analysis project”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-719879-k6x3j/ (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-719879-K6X3J to see the original rows.