A female healthcare worker wearing a hijab.

Equity by Evidence: Race & Ethnicity Inclusion in Research

Introducing our programme of work to ensure race and ethnicity is accounted for in health and care research

The Equity by Evidence: Race & Ethnicity Inclusion in Research project is an ambitious series of work to co-develop a framework for the whole research sector.

The project 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 education and clinical assessment tools have historically been developed and taught using examples from people with lighter skin tones. As a result, medical signs such as jaundice and cyanosis may be more difficult to recognise in people with darker skin tones, increasing the risk of delayed diagnosis and treatment.
  • Medical technologies, including pulse oximeters, have not always been sufficiently tested across diverse skin tones. This can reduce accuracy in people with darker skin tones and contribute to missed or delayed recognition of serious conditions.
  • Clinical research and genomic testing have often been based predominantly on White European populations, meaning genetic variants that are more common in other ethnic groups may be overlooked. This can affect how medicines are prescribed, monitored and tolerated, for example, some chemotherapy treatments.

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: Race & Ethnicity Inclusion in Research, 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