Experts to work towards improving ethnic inclusion in research

The under-representation of ethnic minority communities taking part in research, along with the lack of systematic data collection and reporting, will be investigated by national health and care research stakeholders.

The NHS Race and Health Observatory and National Institute for Health and Care Research (NIHR) are co-hosting a sector wide event today, 26 June. It brings together a number of influential experts to identify solutions in improving ethnic representation in research across the UK. The group will examine historic barriers to engagement and set out new approaches for inclusive research design, delivery and funding criteria.

It follows the Observatory and NIHR publishing a statement of intent in 2023 which set out joint plans to ensure the research sector plays a critical role in reducing ethnic inequalities across health and care.

Key to this is the need for the inclusion of racial and ethnic considerations for accurate data collection, analyses and reporting in medical research. In the UK, White people are 64% more likely than ethnic minority groups to have participated in health research.

The collaboration will see approximately 20 organisations pledge to making research more inclusive and representative of diverse communities so future analyses of data are more robust, accurate, and findings, including those published in academic journals, are meaningful and conclusive. This will lead to healthcare interventions that meet the diverse needs of the UK’s diverse communities and tackle the country’s long-standing health disparities.

Experts from the NIHR, Medical Research Council, Wellcome Trust, NICE, Caribbean & African Health Network, Race Equality Foundation, King’s College London, Understanding Patient Data, and Race on the Agenda will be amongst those represented. Stakeholders from academic journals, along with health, research and social care bodies from the devolved nations will also be in attendance.

Professor Habib Naqvi, Chief Executive, NHS Race and Health Observatory, said:

“Poor representation in health and medical research often leads to the development of medications, clinical assessments and medical devices that do not work well with all communities. We need to take swift action now, focusing our collective actions to improve representation in research. This will include building and rebuilding levels of trust and confidence amongst diverse communities.

“This event kick-starts a collaborative programme with key partners to address the long-standing, historical challenge that has plagued health and medical research in the UK. We are committed to ensuring research outcomes benefit everyone in society.”

Ethnic health inequalities are exacerbated by long-standing issues of marginalised groups being under-represented in health research and trials due to under-recruitment of participants, lack of awareness and targeted engagement, coupled with broad, homogenous ethnic groupings and other factors.

The lack of participation in medical research has led to ethnic minority patients being excluded from the benefits that come from new drugs, clinical trials, personalised medicine and treatments. Trials, including those for cardiovascular and anti-cancer drugs – which lack ethnic diversity and genetic insights – can result in medications being less effective, or even dangerous, for some ethnic groups.

Historic and long-standing disparities are regularly seen in outcomes across maternal health where Black women are nearly four times more likely to die during pregnancy and childbirth compared to White women, and Asian women almost twice as likely.

Ethnic groups are generally under-represented in clinical trials, as was seen during the development of the COVID-19 vaccine. The disparity also exists in participation for breast cancer trials. Black, Asian, and other ethnic minority communities are also poorly represented in genetic medicine research and in risk prediction tools used to calculate the likelihood of developing future diseases.

A 2021 report from the Observatory also highlighted design failings in pulse oximeters leading to the risk of lower levels of accuracy when used on darker skin.

Dr Ngozi Kalu, Assistant Director, Research and Evidence, NHS Race and Health Observatory, said:

“To ensure research is truly impactful and equitable, it must reflect the ethnic diversity of the affected population. The underrepresentation of ethnic minority groups in health and care research continues to compromise the impact of research findings, contributing to persistent health inequalities. This is not only an issue of fairness, but a matter of scientific and clinical accuracy.”

“To effectively address health inequalities, and improve research methodologies, we need to acquire the trust and actively improve participation among Black, Asian and ethnic minority communities. Inclusive research requires more than intention, it demands action.”

The NIHR is currently building on mandating research inclusion as a condition of funding and learning from other successful models of collaboration.

In order to address avoidable health and care omissions like this and to increase the inclusion of all groups currently under-represented in funded research, the NIHR made inclusion a formal condition of funding in November 2024. Today’s event will begin the sector-wide collaboration required to help ensure all future research accounts for ethnicity in meaningful and consistent ways. The culmination of this collaboration will see NIHR’s guidance for researchers develop over time, to support applicants and award holders in the critical, shared endeavour of tackling existing health inequalities, effectively.

Esther Mukuka, Director of Research Inclusion, National Institute for Health and Care Research, said:

“To truly improve the health and wealth of our nation, we must move beyond recognising disparities and take decisive action to eliminate them. This event represents a critical moment for the health and care research sector, not just in identifying the barriers, but in co-creating and committing to bold, evidence-based solutions that ensure research truly reflects the diversity of our communities. Our collective action today will determine the health equity of tomorrow”.

The NIHR is also trying to encourage more Black and Asian people to take part in research through signing up to its Be Part of Research health registry. It is the first UK-wide volunteer registry into all health conditions and makes taking part in health and care research easier than ever before.

Improved recruitment of ethnic minority participants, along with disaggregated ethnicity data, and the inclusion of new principles into research design, funding criteria, and reporting standards are expected to lead to healthier outcomes for communities and patients.