Inequalities in cancer care pathways

University College London (UCL) requires access to NHS England data for the purpose of the following research project:

Inequalities in cancer care pathways

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

UCL aims to investigate the proximal causes of inequalities in cancer outcomes, including survival and, for relevant cancer sites, patient experience, within England, the wider UK, and internationally. The specific objectives are to examine the determinants of inequalities in cancer survival, patient‑reported experience, stage at diagnosis, route to diagnosis, and first‑line treatment

UCL are separately requesting data for Northern Ireland, Wales and Scotland from the relevant data owners. UCL will not be combining row-level datasets across jurisdictions but do seek to apply the same statistical analyses in all datasets. For some analyses, this will involve fitting models in one jurisdiction (i.e., England), and then using those coefficients for statistical analyses in other jurisdictions.

For international analyses, UCL will work with partners to run substantively identical analyses in all jurisdictions and use meta-analysis to combine and explore variation in results.

The following NHS England Data will be accessed:

- NDRS Cancer Consolidated Data Set – necessary to understand proximal causes of inequalities in cancer outcomes to complete the research project.

- NDRS National Cancer Patient Experience Survey (CPES) – Necessary to analyse the impact of diagnostic and treatment pathways on patient‑reported experience and to support investigation into the proximal causes of inequalities in cancer outcomes, including survival, patient experience, stage at diagnosis, route to diagnosis, and first‑line treatment.

- NDRS Cancer Registration Data – Necessary to obtain the essential clinical information required to interpret CPES responses in relation to cancer type, stage, diagnosis pathway, and treatment, enabling accurate analysis of patient‑reported experience alongside the corresponding cancer characteristics.

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: all patients diagnosed with one of the 21 solid organ cancers that form part of the composite measure used to monitor progress towards the 2028 Government ‘early stage’ target (oral cavity, oropharynx, oesophagus, stomach, colon, liver, brain, sarcoma, rectum, pancreas, lung, female breast, melanoma, kidney, bladder, uterine cervix, uterus, ovary, prostate, testis, Hodgkin lymphoma, non-Hodgkin lymphoma, thyroid, and larynx) in England. A list of ICD10 cancer site codes for the data to be minimised by has been provided to NHS England by UCL.

- Limited to data between January 2013 to latest available. This data period is required as UCL are specifically interested in trends and changes in stage, route and treatment (and associated changes in survival) and thus request all available years with reasonable quality stage data.

- All of England data required: this is because the study aims to look at geographical differences in inequalities in cancer care pathways

UCL 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 the research aims to examine inequalities in patient diagnosis and treatment, and how these explain differences in survival. As such, it may support improvements in patient care leading to better outcomes and as such is in the public's interest.

The funding comes from multiple sources. Current funders include:

- Cancer Research UK

- International Cancer Benchmarking Partnership

Funding to continue the work described will be sought on an ongoing basis.

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

Amazon Web Services (AWS) provides IT hosting services to UCL and will store the Data as contracted by UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.

UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.

A professor at the Karolinska Institute will be acting as an advisor but will not have access to the Data other than aggregated output information with small numbers suppressed, nor any input into determining the means or purpose of data processing.

Data will be accessed by:

- Substantive employees of UCL

- PhD students enrolled with UCL. The individuals have completed mandatory data protection and confidentiality training and is subject to UCL’s policies on data protection and confidentiality. The individuals accessing the data will do so under the supervision of a substantive employee of UCL. UCL would be responsible and liable for any work carried out by the individuals. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).

- Individuals holding an honorary contract under the supervision of a substantive employee of UCL for the purposes described in this DSA only. UCL must maintain records in a single location that cover the following details of each individual given access under an honorary contract:

- Their substantive employer;

- Their role in respect of the purpose for the processing specified in the DSA;

- The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;

- The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;

- Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.

UCL have an ongoing Patient and Public Involvement (PPI) programme, at which, they discuss planned and ongoing projects with cancer survivors and other members of the public. This project specifically was discussed with four PPI volunteers, including a lung cancer survivor and a person diagnosed with cancer as an emergency, in June 2024, helping crystallise key components of the research. UCL held additional online meetings with two of the four volunteers, including the person with personal experience of emergency diagnosis of cancer, and these meetings helped clarify our research focus. UCL held a further PPI meeting in November 2024, focusing on experience of emergency diagnosis. PPI representatives highlighted various relevant questions, particularly what they perceived as an ‘obvious’ connection between GP shortages and increased A&E use, something that supports the study's interest in examining area-level measures of diagnostic capacity and function. PPI representatives were also concerned about the geographic and demographic diversity within the dataset, which supports the study team's intention to use UK-wide data and their specific focus on inequalities in diagnosis and care.

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 National Cancer Patient Experience Survey (CPES) , NDRS cancer consolidated dataset and NDRS Cancer Registration Data to the UCL Data Safe Haven (DSH).

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 the UCL DSH.

UCL uses offsite data centre services provided by VIRTUS data centre.

Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.

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).

Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.

Data will be accessed by individuals with an honorary contract with UCL. The individuals will act as agents of UCL at all times under supervision from employees of UCL. Aside from these individuals, access is restricted to employees of UCL 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 some additional information at geographic-level (i.e., sub-ICB or Cancer Alliance), from public data sources. Namely, UCL will link in some information on population structure and on diagnostic test use, including changes in screening. For each patient, UCL will know which sub-ICB or Cancer Alliance they live in, as this is given in the NDRS dataset. UCL will also know the number of faster diagnostic standard referrals per head in the sub-ICB from other data. This geographic information will therefore be linked using this data.

The Data will not be linked with any other data.

The aggregated data with small numbers suppressed derived from the Data will be combined with aggregated data from other UK nations to allow cross-UK analyses. This includes defining case-mix adjustment models in one national dataset and taking the coefficients or weights of that model to other datasets.

Aggregated data with small numbers suppressed derived from this data will also be used to support meta-analyses covering international jurisdictions.

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

Analysts from UCL and individuals with an honorary contract with UCL will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

> Submissions to peer reviewed journals; a minimum of four submissions are expected over the next three years. In reality, UCL expect to publish at least ten papers based on the planned analyses of this data extract.

> Presentations at specific conferences, namely, the CRUK Early Diagnosis conference, the Health Services Research UK conference, the European Network of Cancer Registries conference, and the World Cancer Congress.

> UCL also expect to publish fully anonymous aggregate information for further use in examining trends and in meta-analyses. This may be in the form of dashboards.

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 dataset(s) from which the information was derived.

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

> Journals; aimed at researchers

> Conferences; aimed at researchers and relevant professionals

> Social media; aimed at researchers

> Blogs; aimed at members of the public

> PPIE events; aimed at members of the public

> University and press news articles; aimed at members of the public

> Events targeted at Cancer Alliances

> Engagement with national clinical audits

UCL expect this study to identify areas of the UK where cancer patients are receiving care that would generally be viewed as ‘unusual’, or perhaps ‘inappropriate’. This is expected to support further investigations by health professionals to identify the reasons for this deviance from normal practice, and so improve patient care.

The research findings are expected to:

> help the healthcare system to better understand health and care needs of populations

> help identify improvement of treatments or interventions or healthcare system-design to improve health and care outcomes

> advance understanding of regional and national trends in health and social care needs

> inform planning health services and programmes, for example, to improve equity of access and outcomes

> provide a mechanism for checking quality of care which could include identifying areas of good practice to adopt, or areas of poorer practice which should be addressed

> support knowledge creation or exploratory research, along with the innovations and developments that might result from that exploratory work

Benefits to patients are expected to arise from improvements in the quality of care across the UK.

UCL will engage with National Clinical Audits to discuss whether the proposed measures of 'appropriate' care can or should be added to their reporting. UCL will work with Cancer Research UK to inform their own early diagnosis and treatment strategies and would expect to attend CRUK-organised events aimed at disseminating relevant results to key stakeholders (e.g., Cancer Alliance leads).

UCL are co-investigators in the NIHR Policy Research Unit for Cancer Awareness, Screening and Early Diagnosis and, if relevant, will feed key findings directly to DHSC.

Not stated in the register.