A female healthcare worker wearing a hijab.

Equity by Evidence

Introducing our programme of work to debias health and care research.

The Equity by Evidence programme is an ambitious series of work to co-develop a framework for the whole research sector to follow.

The programme is being delivered in partnership with The George Institute for Global Health (University College London) with funding from the National Institute for Health and Care Research (NIHR).

Why is action needed?

Health and care research should generate knowledge that benefits the whole population. Yet in the UK, much of our health and care research fails to reflect our rich ethnic diversity. This is not merely an oversight – it is a critical flaw that undermines the quality, applicability, and value of research findings.

As a result of flaws in the way that treatments, medicines and diagnostic tests are initially developed, people from ethnic minority backgrounds may receive less effective care for their health problems. This produces health inequalities, where people from certain backgrounds face a higher likelihood of negative outcomes for the same health conditions than their white counterparts.

Examples of what happens when research does not sufficiently account for ethnicity:

  • Healthcare students being taught how to look for jaundice and cyanosis on patients with White skin tones, and therefore less able to spot the signs on people with Black and Brown skin tones.
  • Medical equipment such as pulse oximeters being designed for and tested on patients with White skin tones, and less effective for people with Black or Brown skin tones.
  • Routine genetic tests used to guide chemotherapy, such as testing for DPYD variants, were largely developed and validated in people of European ancestry. This meant an important DPYD variant more common in people of African ancestry was initially missed and has only recently been added to the NHS Genomics Hub. Failure to identify these variants can lead to severe side effects affecting the bone marrow, bowel and skin, and, in some cases, death.

All of the above can mean slower diagnosis, less effective treatment, and potentially avoidable harm for patients.

What are we doing?

We are developing a sector wide approach to make health and care research more representative of ethnic minority groups.

Through the Equity by Evidence programme, we are bringing together research funders, universities, researchers, regulators, publishers, healthcare organisations, charities, community groups and people with lived experience to co-develop a practical framework for the whole sector.

The framework will set out a shared approach to accounting for race and ethnicity throughout the research lifecycle, from how studies are funded and designed through to how findings are analysed, reported and communicated. It will be supported by practical tools, guidance, training resources and examples of best practice to help organisations put the framework into action.

Our goal is to ensure that health and care research produces the strongest possible evidence for everyone, helping to improve research quality, strengthen public trust and reduce health inequalities. The programme is being developed using a collaborative process, ensuring that the organisations responsible for delivering research are directly involved in shaping the solutions that will ultimately be adopted across the sector.

Timeline and approach

The Equity by Evidence programme uses the Policy Lab method, an approach that brings together a diverse range of stakeholders to explore challenges, identify barriers to change and co-design practical solutions.

The process began with an initial cross-sector workshop held in 2025, which brought together more than 40 representatives from across the research sector and highlighted both the need for change and the willingness of organisations to work together to achieve it.

Planning stage (June 2025)

  • Initial exploratory workshop
  • Identification of key barriers, opportunities and recommendations for sector-wide action.

Launch (June 2026)

  • Funding from NIHR confirmed
  • Publication of Equity by Evidence report and outline of our vision and roadmap for the development of a shared framework

Development (2026-2027):

  • Series of Policy Lab workshops led by The George Institute for Global Health.
  • Co-development of a shared framework for accounting for race and ethnicity in health and care research.
  • Development of practical tools, training materials and implementation resources.
  • Ongoing engagement with researchers, funders, regulators, publishers, community organisations and people with lived experience.

Implementation (2027-2030)

  • Launch of the framework and supporting toolkit.
  • Universal adoption by organisations across the research sector.
  • Monitoring progress, sharing learning and evaluating impact on research practice and outcomes.

Participating organisations 

The programme is supported by a growing coalition of organisations from across the UK research landscape. Organisations represented in the initial policy lab process include: 

  • Association of Medical Research Charities (AMRC) 
  • Cancer Research UK 
  • Caribbean & African Health Network 
  • Department of Health and Social Care (DHSC) 
  • Elsevier 
  • Health and Care Research Wales 
  • Health and Social Care Northern Ireland 
  • Health Research Authority (HRA) 
  • Imperial College London 
  • King’s College London 
  • Medicines and Healthcare products Regulatory Agency (MHRA) 
  • National Institute for Health and Care Excellence (NICE) 
  • National Institute for Health and Care Research (NIHR) 
  • NHS Race and Health Observatory 
  • NIHR Research Support Service 
  • Nuffield Trust 
  • Race Equality Foundation 
  • The George Institute for Global Health 
  • The Lancet 
  • Trial Forge 
  • UK Research and Innovation (UKRI) 
  • Understanding Patient Data 
  • University of East London 
  • Wellcome

The coalition will continue to expand as the programme develops, helping to build a shared commitment to improving the quality and inclusiveness of health and care research across the UK.

Useful links and resources

  • Statement of intent between the NHS Race and Health Observatory and the National Institute for Health and Care Research (NIHR).
  • Announcement of funding received from the National Institute for Health and Care Research (NIHR).
  • Read Improving Health and Care Research Through Better Representation of Black, Asian, and Ethnic Minority Communities: A collaborative approach to reducing health inequalities through inclusive research – the publication which followed our cross-sector workshop in 2025.
  • Our Health Action Resource Platform (HARP) allows users to explore NHS performance data broken down by ethnicity across regions, systems, or providers. It aims to illustrate racial inequalities in health through data visualisation in an attempt to drive action in both policy and practice.