Outcomes from the Lynch Syndrome-Bowel cancer screening programme

The Data will be used for the purpose of a service evaluation

The Data will be used to answer the following objectives:

Primary Objectives

• Determine frequency of disease: Assess how often people with Lynch syndrome develop bowel cancer or polyps.

• Evaluate colonoscopy effectiveness: Understand how well colonoscopies detect bowel cancer and polyps, and their impact on survival.

• Participation in screening: Measure the proportion of Lynch syndrome patients who take part in the LS-Bowel Cancer Screening Programme (LS-BCSP).

• Influencing factors: Explore personal, social, and health-related factors that affect participation and colonoscopy outcomes.

Secondary Objectives

• Describe how common bowel cancers and colonic polyps are in Lynch syndrome, and their characteristics.

• Examine differences in cancer and polyp occurrence by gene type, individual, social, and healthcare-related determinants.

• Evaluate how colonoscopy quality and other factors influence detection of cancer and precancerous growths in LS patients.

• Assess adherence to colonoscopy surveillance intervals in line with British Society of Gastroenterology guidelines.

• Measure the proportion of LS patients participating in the LS-BCSP, and understand the factors influencing participation.

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 Bowel Cancer Screening System (BCSS) to London Northwest University Healthcare NHS Trust. 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 not be transferred to any other location.

The Data will be stored on servers at London North West University Healthcare NHS Trust and backed up on the secure NHS portal at London North West University Healthcare NHS Trust.

The Data will be accessed onsite at the premises of London North West University Healthcare NHS Trust and 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).

The Data will not be linked with any other data.

The expected outputs of the processing will be:

• A report or presentation of findings to the NHS Bowel Cancer Screening Programme via quarterly review meetings.

• Submissions to peer reviewed journals, anticipated to produce at least one primary manuscript within 12 months of data receipt, with potential for further publications arising from the dataset if secondary analyses are performed.

• Presentations at appropriate academic conferences including Lynch syndrome UK annual conference.

The outputs from this service evaluation will contain aggregated, anonymised results only. No identifiable patient-level data will be included in any outputs. Postcode is converted to Index of Multiple Deprivation (IMD) prior to transfer, all dates either changed to age or only month/year. No datapoints can be traced back to individuals directly with no possibility for re-identification. Results will be presented at group level, with small numbers suppressed in accordance with NHS England disclosure control guidance and relevant disclosure rules for the dataset from which the information was derived

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

• Journals

• Workshops involving NHS BCSP staff, endoscopists, and patients

• Webinars open to patients and clinical staff

• Social media / website via Lynch syndrome UK patient charity, Bowel Cancer UK

• Public reports including those aimed for patients or participants

• Public events such as academic conferences

• Posters displayed at academic or appropriate patient-led conferences

• Patient Information leaflets available at Lynch syndrome UK and NHS BCSP

• Press/media engagement

• Public promotion of the evaluation via social media or academic / clinical events and conferences as listed above Target date for publication and dissemination of results will be approximately 1 year from the data receipt

Outcomes from this project will help inform how effectively colonoscopy detects bowel cancer and colonic polyps in the first national cohort of Lynch syndrome patients from the first two years of the programme. The study will evaluate the quality of colonoscopy and assess the benefits of regular check ups in this high risk group. In partnership with NHS England Bowel Cancer Screening Programme, findings from this service evaluation are expected to contribute to evidence-based decision making for national and local stakeholders, including policymakers, clinicians, programme leads, to support optimisation of surveillance pathways in Lynch syndrome nationally. Quality assurance and rigorous monitoring are central to the NHS Bowel Cancer Screening Programme. This service evaluation aims to evaluate programme standards, clinical outcomes and patient experiences in order to inform best practice and drive improvements in care for people with Lynch syndrome. Furthermore, successes from this programme in England will provide evidence to inform policy makers across the devolved nations to promote equitable care across the UK.

The use of the data could:

• help the system to better understand the health and care needs of the Lynch syndrome population.

• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

• advance understanding of regional and national trends in health and social care needs, and variation in surveillance quality and outcomes across the regions

• advance understanding of the need for, or effectiveness of, preventative health and care measures in Lynch syndrome, specifically the effectiveness and quality of colonoscopic surveillance in Lynch syndrome

• inform planning health services and quality assurance within national screening and surveillance programmes, including to improve equity of access, experience and outcomes.

• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.

• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

• Data-driven recommendations to improve equity, consistency and outcomes of care for the Lynch syndrome population.

Through publication of these results, it will provide important evidence for the national screening service as well as individual clinicians and policymakers to drive improvements in care for people with Lynch syndrome across the UK.

Yielded Benefits is not a requirement for new applications.