Exploring inequalities in bowel cancer screening uptake​

​​The Data will be used for the purpose of a research project: Exploring inequalities in bowel cancer screening uptake

The following are the objectives of the research:

• To conduct a comprehensive assessment of inequalities in bowel cancer screening uptake in England since the introduction of the FIT test (2019) and the COVID 19 pandemic.

• To examine differences in screening participation across population groups, including by sex, socioeconomic status, ethnicity, and presence of learning or physical disabilities.

• To explore ecological, area level drivers of inequality using the latest Office for National Statistics (ONS) census data (e.g. ethnicity, education, and socioeconomic profiles).

• To assess whether the introduction of FIT and the impact of COVID 19 have affected screening uptake differently across population groups.

• To identify groups with persistently lower screening uptake who may benefit most from targeted interventions.

• To generate evidence that can inform and better target current inequality reduction efforts and support the design of future bowel cancer screening interventions.

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England will provide the relevant records from the NHS Bowel Cancer Screening database to the University of Southampton. The Data will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The Data will be stored on servers at University of Southampton

The University of Southampton stores backup data in the cloud using Microsoft Azure Backup Services

The Data will be accessed via remote access.

For 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).

The Data will be combined with publicly available area level data (e.g. ONS Census 2021 and Index of Multiple Deprivation). There will be no patient level linkage.

Socioeconomic status and ethnicity will be estimated using geographical indicators by linking screening data to ONS and IMD data at Lower layer Super Output Area (LSOA) level or higher only. All outputs will be aggregated, and no individual level records will be linked.

To minimise confidentiality risks:

• For very small population groups (e.g. people with indeterminate/unknown gender or learning disabilities), only national level data will be used, with no locality information.

• The mapping key between bowel cancer screening system identifiers and the project’s anonymised IDs will not be retained, preventing re identification even if datasets were accessed together.

The expected outputs of the processing will include:

• A report of findings to the University of Southampton and NHS England Bowel Cancer Screening Programme

• Submission(s) to peer-reviewed scientific journals

• Presentations to NHS England Bowel Cancer Screening Programme stakeholders

• Presentations at relevant national and international academic and public health conferences

• Public- and service-facing summaries disseminated via Bowel Cancer UK (e.g. website and newsletter)

• Outputs contributing to a PhD thesis (University of Southampton)

No dashboards, tools, or open research databases will be produced as part of this project. Outputs will be limited to analytical findings and associated dissemination materials.

Outputs will contain aggregated information only, with appropriate statistical disclosure controls applied. This will include:

Suppression of small cell counts in line with NHS England disclosure control guidance

Aggregation of categories where necessary to minimise re-identification risk

Careful consideration of combinations of variables (e.g. geography, demographic characteristics) to prevent inadvertent disclosure

No individual-level data will be included in any outputs

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

• Peer-reviewed academic journals

• Presentations and briefings to NHS England Bowel Cancer Screening Programme and associated stakeholders

• Academic conferences (e.g. public health, epidemiology, cancer screening)

• Public-facing summaries via Bowel Cancer UK platforms (website and newsletters)

• Reports and presentations shared with the project advisory group and relevant stakeholders

Where appropriate, findings will also be shared through workshops or stakeholder engagement sessions with screening programme teams to support interpretation and application of results.

Patient and Public Involvement (PPI) is embedded throughout the wider PhD programme supporting this project. Public contributors are involved in reviewing plain language summaries, contributing to interpretation of findings, and supporting dissemination to wider audiences. Where appropriate, outputs will be co-developed with PPI members to ensure findings are communicated in an accessible and meaningful way to the public and to groups under-served by screening programmes. This approach supports inclusive dissemination and helps ensure findings are relevant to populations currently under-served by bowel cancer screening.

The use of the data is expected to:

• Improve understanding of inequalities in bowel cancer screening uptake across population groups in England

• Inform the design and targeting of interventions to improve equity of access, experience, and outcomes within the bowel cancer screening programme

• Support planning and optimisation of screening services and programmes

• Advance understanding of population-level trends in screening participation following the introduction of FIT and the COVID-19 pandemic

• Contribute to the evidence base supporting preventative health measures and early cancer detection

The outputs will support knowledge generation and evidence-based decision-making within the NHS and wider public health community, with the ultimate aim of reducing inequalities in screening uptake and improving health outcomes.

The expected benefits of this study are to provide up-to-date evidence on which groups in England are currently underserved by the bowel cancer screening programme and to disseminate these findings through academic and public-facing channels, including a publication and/or conference presentation and wider communication via Bowel Cancer UK and screening services. This evidence will help the screening programme and researchers focus efforts on groups with the greatest need, supporting changes to improve equitable access and informed participation and ensuring any new interventions avoid worsening and where possible actively reduce inequalities in screening uptake. Over the longer term, this could contribute to increased screening uptake, improved early detection, and reduced inequalities in bowel cancer outcomes between population groups.

Yielded Benefits is not a requirement for new applications.