Equality, Diversity and Inclusion (EDI) in Health and Care Research pilot

Different groups of people respond differently to illnesses and treatments. For example, we know that the 3 most common cancers diagnosed in England vary by gender and age.

Therefore, if research fails to include a broad range of participants, results may not be applicable to the whole population. Only by studying the effects of a treatment on different groups can we fully understand its impact.

A pilot is taking place which will allow the Department of Health and Social Care (DHSC) and the National Institute for Health and Care Research (NIHR) to access data to better understand EDI in health research.

You can find out more about how NHS England collects, processes, uses and protects your data in the EDI in Health and Care Research Transparency Notice.

The personal data collected from NHS trusts in England will be:

• NHS number (of people participating in health research)
• health data implied from research speciality (such as, participation in cancer trials)

NHS England will match the NHS number collected from the NHS trusts with the NHS number held within its own systems to obtain the following data about people who have participated in health research:

• postcode
• date of birth
• age range (obtained from date of birth)
• gender (recorded in Patient Demographics Services (PDS) as administrative gender. Provided by the General Register Office and as gender is written on the birth certificate).

Data will be aggregated, with small numbers suppressed in line with statistical standards before it is made available for approved analysts to use. You can find more information on this Suppression rules webpage.

Ethnicity data is out of scope for this initial phase of the project. The source and the use of the ethnicity data will be considered in the later stages of the project.

The Equality, Diversity and Inclusion in Health and Care Research Pilot Directions 2025 provide NHS England with a statutory basis to collect and process information from the NHS trusts who are part of the pilot.

Under section 259(1)(a) of the Health and Social Care Act 2012, a data provision notice is published on the NHS England website. The NHS trusts involved in the pilot are required to share information by law and therefore confidence is satisfied under the legal obligation.

No. Where there is a legal requirement for NHS trusts to share information with NHS England, neither the UK General Data Protection Regulation (UK GDPR) right to object nor the national data opt-out apply.

NHS England will not be sharing confidential patient information it receives with other organisations and therefore national data opt-out policy would not apply.

As data controller for the data held by you, in line with Caldicott Principle 8 and the UK General Data Protection Regulation (UK GDPR) we would recommend you update your current DPIA for your related processing of research participant data to include who you are sharing data with and why.

NHS England has completed an EDI pilot DPIA for its use of data for this pilot.

Yes. To comply with your own responsibilities as data controller, we would recommend you document who you are sharing the data with and why. It is good practice to document this on your trust’s Information Assets and Flows Register.

If your trust opts-in to the pilot, in line with Caldicott Principle 8 and the UK General Data Protection Regulation (UK GDPR), we would recommend you update your privacy notice and other transparency materials, to meet your duties as data controller for the data you hold. Transparency materials set out what data is being shared, for what purposes, and what people’s rights are.

NHS England has published its own Transparency Notice specific to this project, which you may wish to signpost to in your own transparency materials.

NHS England has also produced a suite of universal IG templates to support the lawful use of data within health and care, including a Privacy Notice template, which may help with this activity. The adoption of the template is non-mandatory.