The socioeconomic inequalities in the diagnosis and treatment of colorectal and ovarian cancers in the England (ODR2021_179)

The Data will be used for the purpose of a research project: The socioeconomic inequalities in the diagnosis and treatment of colorectal and ovarian cancers in the England (ODR2021_179)

The hypothesis for the study is that there are inequalities in the diagnosis and treatment of colorectal and ovarian cancer in England.

• The team will describe how treatment differs according to:

- Stage at diagnosis

- Patient age

- Tumour morphology

- Comorbidities

• The team will explore potential differences in diagnostic and treatment intervals by socioeconomic group, and any variation in treatments received for the different socioeconomic groups.

• Multivariable logistic regression models will be generated that control for confounding variables including:

- Age

- Stage

- Morphology

- Comorbidities

- Route to diagnosis

- Cancer alliance

This will help isolate any variation that may be attributable to clinical decision making. Previous studies focused on defined pathway time intervals, the team will use a new methodology which encompasses the whole of the secondary care pathway. By using this definition the team will explore differences in time to diagnosis and treatment, using logistic regression models the team will control for important variables.

Access to the data is restricted to a single, named researcher — a Research Fellow of Hull York Medical School who was employed by the University of Hull between 2020 and 2023. The researcher is now employed by the University of Leeds and holds an honorary contract with the University of Hull for the purposes of completing the study. The researcher has completed all required information governance and data protection training. No other individuals will be permitted to request or access the data.

The data will be used solely for research examining socioeconomic inequalities in cancer care in England. Specifically, the research will evaluate:

1. Socioeconomic inequalities in the receipt of ovarian and colon cancer treatment; and

2. Socioeconomic inequalities in the timeliness of diagnosis and treatment.

The data will not be used for any other purpose beyond these defined research themes. It will not be used for commercial, administrative, or teaching purposes, nor for research outside the stated scope.

The Data will not be used for any purposes outside the approved research themes, which focus solely on evaluating socioeconomic inequalities in the receipt and timeliness of ovarian and colon cancer treatment in England.

Specifically, the Data will not be used for:

• Artificial intelligence or machine learning development or validation;

• Service provision or consultancy for commercial organisations;

• Projects conducted by or on behalf of commercial entities, or by organisations outside the academic or NHS sectors;

• Any activities undertaken on behalf of organisations not named as data controllers in the Data Sharing Agreement.

The Data will not be used for any purpose other than those detailed in the approved project scope.

The Office for Data Release (ODR) was responsible for reviewing and approving the request for access to the Data.

The Office for Data Release (ODR) were responsible for responding to and approving requests to process PHE data. Through this approval process they aim to maximise the benefits that data access can bring to individuals, the NHS, and broader health and social care systems, while:

• Managing and minimising any risks to confidentiality

• Ensuring that the rights and interests of individuals are respected

• Promoting high standards of research governance

• Upholding their obligations under data protection legislation and associated best practice with respect to access, use or sharing of health data

• Maintaining the trust and confidence of the public

Applications for ODR Approval can be submitted for:

• Individual-level or unit-level data, which is data relating to a single person; in this dataset, each row typically represents an individual person and each column an attribute such as age, gender and the disease they have been diagnosed with

• Aggregate-level data, which is summed and/or categorised data that consolidates data relating to multiple purposes

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

No data will flow into NHS England or to any other individual or organisation, commercial or academic institution. Only aggregated, non-identifiable data with small number suppression will leave the Secure Data Environment. These aggregated outputs will be used solely for the purposes of the approved academic study, which examines:

1. Socioeconomic inequalities in the receipt of ovarian and colon cancer treatment; and

2. Socioeconomic inequalities in the timeliness of diagnosis and treatment.

No record-level, identifiable, or pseudonymised data will be shared outside the Secure Data Environment.

The dataset was originally received from the Office for Data Release (Public Health England) in October 2021. Since that time, no additional data has ingressed into the Secure Data Environment, and no further data has flowed out of Public Health England, NHS Digital, or NHS England.

All analyses have been conducted within the Secure Data Environment, and only aggregated, non-identifiable outputs (with small number suppression applied) will be released for the purposes of the approved academic study.

The Data will not be transferred to any other location.

The Data will be stored on servers at Arrow Business Communications LTD.

University of Hull uses offsite back-up services provided by Arrow Business Communications LTD.

The Data will be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

• Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

• Access controls granting users the minimum level of access required are in place;

• Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

• Multifactor authentication (MFA) is required for remote access;

• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

• All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

Public Health England performed the linkage between the following datasets: cancer registrations, Hospital Episode Statistics, and the cancer pathway. The dataset received has not been, and will not be, linked with any additional datasets.

The Data will not be linked with any other data.

The outputs of this project have largely been completed, with findings disseminated through multiple academic, clinical, and public engagement channels to ensure they reach all relevant audiences. One further peer-reviewed publication is anticipated in 2026, presenting the results from the colon cancer cohort (comparable in scope to the publication listed below in Cancer Epidemiology, but focused on colon cancer).

Completed and expected outputs include:

• Peer-reviewed publication:

The main findings have been published in Cancer Epidemiology (https://doi.org/10.1016/j.canep.2025.102778).

• Presentations:

Results have been presented at York Teaching Hospital, Leeds Teaching Hospitals, Hull York Medical School, and the NHS England Yorkshire and the Humber Academic Presentation Day.

• Creative dissemination:

Key findings have been translated into commissioned artwork and an animated short film, “Bowel and Ovarian Cancer: Are We Treated Differently?” (https://www.lillywilliams.net/transform), to make the research accessible to the wider public.

• Public engagement and communication:

A blog post summarising the findings has been published by Hull York Medical School: “Research sheds light on healthcare disparities in cancer patients” (https://www.hyms.ac.uk/research/stories/research-sheds-light-on-healthcare-disparities-in-cancer-patients).

• Conference dissemination:

Findings have been shared through posters and oral presentations at major national and international conferences, including:

o ESMO Congress 2023 (Madrid)

o Cancer Research UK Data-Driven Cancer Research Conference 2024 (Manchester)

o Society for Social Medicine and Population Health Conference 2023 (Newcastle)

o British Gynaecological Cancer Society Annual Scientific Meeting 2023 (Aberdeen)

The outputs will not contain any NHS England data and will include only aggregated information, with small numbers suppressed in accordance with the relevant disclosure rules for the dataset(s) from which the information is derived.

The outputs from this research have been disseminated through multiple academic, clinical, and public engagement channels to ensure findings reach all relevant audiences.

• Peer-reviewed publication: The main findings have been published in Cancer Epidemiology(https://doi.org/10.1016/j.canep.2025.102778).

• Presentations: Results have been presented at York Teaching Hospital, Leeds Teaching Hospitals, Hull York Medical School, and the NHS England Yorkshire and the Humber Academic Presentation Day.

• Creative dissemination: Research findings have been translated into commissioned artwork and an animated short film, “Bowel and Ovarian Cancer: Are We Treated Differently?” (https://www.lillywilliams.net/transform), making the work accessible to the wider community.

• Public engagement and communication: A blog post summarising key findings has been published on the Hull York Medical School website: “Research sheds light on healthcare disparities in cancer patients”(https://www.hyms.ac.uk/research/stories/research-sheds-light-on-healthcare-disparities-in-cancer-patients).

• Conference dissemination: Findings have been shared through posters and oral presentations at major national and international conferences, including the ESMO Congress 2023 (Madrid), Cancer Research UK Data-Driven Cancer Research Conference 2024 (Manchester), the Society for Social Medicine and Population Health Conference 2023 (Newcastle), and the British Gynaecological Cancer Society Annual Scientific Meeting 2023 (Aberdeen).

This multi-channel dissemination strategy ensures that results inform both academic research and healthcare practice, while also engaging patients, policymakers, and the wider public.

The findings of this research study are expected to support evidence-based decision-making for policy-makers, clinicians, and patients. By examining inequalities experienced by individuals with colon and ovarian cancer—particularly regarding time spent within secondary care and disparities in treatment—this work aims to inform best practice and ultimately improve care, treatment, and patient experience.

The data will also help the wider health and care system develop a better understanding of population needs, especially by highlighting the inequalities faced by patients living in more deprived areas. Socioeconomic inequalities in survival are well recognised, and this research may contribute to identifying or improving treatments, interventions, or aspects of system design that could enhance health outcomes and patient experience.

Furthermore, these data can support planning and commissioning of services and programmes to improve equity of access, experience, and outcomes. They also offer a mechanism for monitoring the quality of care—identifying areas of good practice that can be shared, as well as areas of poorer practice that require attention. Finally, the study will contribute to knowledge creation and exploratory research, supporting innovation and the development of new approaches to improve cancer care.

The team have published the following paper - "Are there inequalities in ovarian cancer diagnosis and treatment in England? A population-based study”. https://doi.org/10.1016/j.canep.2025.102778