From testimonies to action: embedding ethnic minority participation in health research after the COVID-19 Inquiry

The most recent conclusions from the United Kingdom (UK) COVID-19 Inquiry remind us of an enduring, unpalatable reality: systemic ethnic inequalities. Summarising findings from the 274-page Module 4 report on vaccines and therapeutics, the Inquiry Chair, Rt. Hon. Baroness Heather Hallett, lauded the pandemic’s vaccine roll-out as an ‘extraordinary feat’ delivered to most of the population in record time. ¹ The caveat was an honest, if not unknown, acknowledgement that vaccine uptake was much lower among disadvantaged communities and some ethnic minority groups.

Multiple factors account for the complexity of vaccine hesitancy, driven in part by misinformation, mistrust, concerns about safety and efficacy and structural and systemic inequities. ² But a central element is a deep structural failure: the persistent exclusion of ethnic minority groups from the health research that developed the vaccines. If the Inquiry is to effect meaningful future change, the key lesson learnt is not to play retrospective catch-up during times of crisis, but to embed inclusive practices proactively in research before the next health emergency. ³

Early in the pandemic, ethnic disparities in infection, hospitalisation and mortality rates were reported. The then Public Health England highlighted striking inequalities, especially among Black African, Black Caribbean and South Asian communities. ⁴ However, much ethnicity research generally is undermined by being based on NHS datasets where ‘ethnicity’ is variably recorded, ⁵ and health research conducted during the pandemic was flawed by structural deficits. Clinical trials, behavioural studies and public health evaluations often failed to recruit sufficiently heterogeneous samples representative of the wider diverse population. ⁶ Consequently, interventions were developed and rolled out with inadequate appreciation of how they would function across highly disparate populations.

Earlier Inquiry modules emphasised the consequences of this failure. Witnesses described barriers to accessing care, mistrust of institutions and the shortfalls of public health messaging that simply did not resonate culturally or linguistically. ⁷ But these were not simply communication shortcomings, failures that could be resolved by fronting up palatable faces in palatable local settings. When ethnic minority communities are missing from the research cycle – from leadership, research design, recruitment and results dissemination – the subsequent evidence is intrinsically incomplete. Policies built upon such evidence can be fundamentally flawed, and risk compounding, rather than reducing, health inequalities. ⁸

Of course, the under-representation of ethnic minority communities in health research is not new. It is present in multiple fields, from clinical trials to health services research. Barriers to their inclusion, which can vary by ethnic group and location, include limited access to information, language barriers, suspicion of medical experimentation, negative feelings about the purpose of research and misconceptions about research itself. ⁹ Underpinning these factors are more deeply ingrained issues of trust arising from historical health injustices like the US Tuskegee Syphilis Study ¹⁰ and discriminatory experiences of the health system. ¹¹

The gravitas of the COVID-19 Inquiry brings fresh urgency to the current landscape. It frames inclusion of ethnic minority groups not as a methodological preference for individual research projects, but as a pressing ethical and public health imperative. The question no longer concerns the desirability of involving ethnic minority communities in health research, but rather how do we justify inclusivity inaction when the consequences are so stark?

Embedding ethnic minority people meaningfully in health research requires a paradigm shift: from recruitment of non-White individuals to make up a sample size calculation, to genuine partnerships with communities, from time-limited, project-specific relationships to longer-term collaborations. NHS England’s (NHSE) Research Engagement Network (REN) Development Programme, launched in 2022, recognised this need. With funding spread across the country’s Integrated Care Systems, it seeks to boost diverse participation in health research by forging bridges with underserved communities, partnering with local organisations, training community research champions and fostering inclusive research practices. Central to its work is the building of lasting relationships with voluntary, community and social enterprise partners to ensure research represents the whole population. ¹²

The imminent subsuming of the NHSE under the Department of Health and Social Care threatens to jeopardise such commendable, far-sighted ambitions to address systemic inequalities in research participation. Equally important is the apparent deprioritisation of ethnicity specifically from the NHS 10-Year Plan, ¹³ and the conflation of the specific challenges faced by ethnic minority communities with ‘disadvantaged communities’ generally in particular geographic locales. It is a trend that mirrors the general side-lining of equality, diversity and inclusion from public discourse as political debate shifts rightwards and ‘woke’ measures to tackle societal discrimination are reversed or dismantled.

The COVID-19 Inquiry has created a critical opportunity for national reflection that extends beyond the pandemic. Its findings should pave the way for an examination and transformation of the country’s research ecosystem. Ethnic minority community involvement must be normalised, not applauded for its occurrence, expected, not an optional add-on. It should be routine, not a response to a crisis, mainstream resourced, not a secondary budget line in a small financial pot, and underpinned by long-term commitment, not short-termism.

If the UK is to recognise those disproportionately harmed by the pandemic, it must ensure that future evidence is co-created with, and not merely about, its served communities. Without such action, we risk having the same testimonies repeated in the wake of the next health pandemic.