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

The Equality, Diversity and Inclusion (EDI) in Health and Care Research pilot aims to improve the diversity of people participating in National Institute for Health and Care Research (NIHR) funded research to ensure their research is representative of the wider UK population.

The purpose of this project is to establish an information system for the collection and analysis of data from participating, publicly funded organisations providing health or social care in England for purposes of the Equality, Diversity and Inclusion in Health and Care Research Pilot (EDI Pilot). 

Trusts will record the NHS number of each person recruited into an NIHR funded research study in their local portfolio management system (LPMS). Only trusts using EDGE as their LPMS can opt in, all other LPMS system can join later. Each month, LPMS providers will securely transfer this data to NHS England.

NHS England will then link the NHS numbers of those participating in NIHR funded research studies to existing demographic data held by NHS England. This includes age, sex and the location of participants by postcode. NHS England will only provide aggregated data to DHSC and NIHR with small numbers suppressed.

Trust’s research and development directors must authorise their trust to opt-in to the pilot by completing an opt-in form.

Once a trust has opted in, NHS numbers will be automatically sent from their LPMS to NHS England at the end of each month. Only NHS numbers is collected after the opt-in date. No retrospective data will be transferred to NHS England.

Under data protection law, you have a number of rights including:

• the right to be informed about how your data is being processed
• the right to access what data is held about you
• the right to have inaccurate data rectified
• the right to restrict the processing

You can read more about the health and care information collected by NHS England, and your choices and rights in:

• how we look after your health and care information
• NHS England General Transparency Notice

If you would like to find out more about how NHS England collects, processes, uses and protects your data please read the EDI in Health and Care Research Pilot Transparency Notice below.