Understanding the epidemiology of cancer within the North West of England.

Lancaster University requires access to NHS England data for the purpose of the following research project:

Understanding the epidemiology of cancer within the North West of England.

The following is a summary of the aims of the research project provided by Lancaster University:

The charity North West Cancer Research fund research into understanding and stopping cancers that are most significant to the people in the region. In order to fulfil this objective, it is

imperative that the charity have the knowledge and understanding of how cancer impacts the region.

In North West England, cancer prevalence and mortality are on average significantly higher than the rest of the UK, with some areas flagged as the worst in Europe (North West Cancer Research, 2020). Previous research, for example in the Morecambe Bay region, has shown significant variation in the cancer risk between local areas (Jones et al., 2024). Further research therefore needs to take place to understand the distribution of cancers at the local level to allow for highly targeted interventions and the allocation of resources to reduce these inequalities.

The benefits of access to this dataset will be significant. Understanding the distribution of cancers in a region that has evident inequalities will help highlight areas where further intervention is urgently required and what this intervention should consist of. This will inform North West Cancer Research’s (NWCR) strategy, the major cancer charity operating specifically in this area of England.

Objectives

• To produce descriptive statistics which highlight the prevalence, incidence and mortality of cancer within the North West and the rest of England to allow for comparison. For example, in Lancashire lung cancer rates are 9% above the national average.

• To make statistical comparisons between different areas of the North West and the rest of England.

• To identify possible relationships between cancer and demographic, socioeconomic and environmental characteristics.

The following NHS England Data will be accessed:

• NDRS Cancer Registrations– necessary because understanding the distribution of cancer cases and the areas with higher or lower cancer incidence will help develop our understanding of why cancer might be higher or lower in these areas. It will help the development of hypotheses for further research, allow for the exploration of inequalities in cancer incidence, identify areas which need further support for cancer prevention and also allow for the direction of resources to areas with a higher cancer burden.

The level of the Data will be

• Pseudonymised

The Data will be minimised as follows:

Limited to data between 2021 latest available at the time of dissemination (expected in 2025).

Lancaster University is the research sponsor and 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 GDPR is:

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 data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest 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 North West Cancer Research. The funding is specifically for the project described. Funding is in place until 01/01/2028 with options to extend as required beyond that point.

The funder will have no ability to suppress or otherwise limit the publication of findings.

Cancer Research UK provides IT hosting services to University of Lancaster and will store the Data as contracted by the controller.

No direct Public and Patient Involvement and Engagement group has of yet been engaged for this project, when developing use’s for this data in the future will be discussed with the Northwest Cancer Research Board, who has healthcare professional community members present.

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 NDRS Cancer Registrations datasets to Cancer Research UK.

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 Cancer Research UK.

The Controller 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).

Remote processing will be from secure locations England/Wales.

The data will not leave England/Wales at any time.

Access is restricted to employees or agents of University of Lancaster 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 publicly available ONS Mortality data tables.

There will be no requirement and no attempt to reidentify individuals when using the Data.

Analysts from the University of Lancaster will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

· A report of findings to North West Cancer Research annually on the state of cancer in the North West to be available on their website.

· Submissions to peer reviewed journals at least one per year in peer review and open access journals.

· Detailed metrics for funding management and prioritisation.

· Presentations to North West Cancer Research and associated members such as patients and health care professionals

· Presentations at cancer-related or data-related conferences such as Health Data Research UK conference or North West Cancer Research Symposium

· Publication of dashboards on North West Cancer Research's website

· Production of a mapping tool which will be made available on North West Cancer Research's website open access.

The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.

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

· Journals

· Workshops involving academics, members of the public, healthcare professionals and charity members

· Webinars open to members of the public, healthcare professionals and charity members

· Social media

· Public reports

· Industry newsletters

· Briefing documents provided to North West Cancer Research

· Internal reports for NWCR and partner charities.

· Public events such as the North West Cancer Research Symposium

· Press/media engagement

· Public promotion of the research via the media and the website of North West Cancer Research

· Reports aimed at patients, healthcare professionals and North West Cancer Research members

The first outputs will be produced within the first six months of receiving the datasets and updated yearly once the updated data is available.

The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users with a specific focus on cancer and particularly understanding the state of cancer within the North West and between the North West and other areas of England. The services provided to clients are expected to identify improvement opportunities which the client may then exploit by making changes to systems, processes, resources or infrastructure in order to improve patient experience and patient care.

The use of the data could:

• help the system to better understand the health and care needs of populations.

• 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.

• advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes.

• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

• 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).

The outputs from this project aim to identify inequalities in the burden of cancer within the North West region and between the North West and the rest of England. Understanding the state of cancer within the North West and when comparing it to the rest of England will help identify areas where further research needs to be conducted and highlight areas where resources and further support are required.

It is hoped that through 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 policy decisions for or within the NHS or treatment decisions in relation to specific patients. This research will also aid the direction of research funding for the charity North West Cancer Research to areas or cancers with the highest burden.

Clients will need to take action based on the information provided to them in order to realise the potential improvement opportunities. For example, North West Cancer Research directing funding for further research towards areas or cancers which have a high cancer burden within the region.

Yielded Benefits is not a requirement for new applications.