What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study

Abstract

The lack of ethnic diversity in health research participation is a multi‐dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour‐blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re‐examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how ‘usual’ research practices are unwittingly exclusionary and promote ‘methodological whiteness’ (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research.

Critically appraising for antiracism

“…to reflect on previous practices with critical race perspectives, acknowledge complicity in replicating social inequalities, and actively engage to produce more inclusive research (Rai, 2022).…”

“…The location in which a trial is undertaken undoubtedly has implications for recruitment, and a recent study by Rai and colleagues (2021) highlighted this factor, finding that areas with higher levels of deprivation and higher populations of minoritised push recruitment in areas already set up to support research; those areas with more educated and middle-class populations (Rai, 2022).…”

“…It can be no coincidence that groups who are racially marginalised and discriminated against are more likely to suffer from certain ailments, and it is no coincidence that they are not represented in research and trials -these "truths" are shaped and influenced by structural inequalities (Hamel, 2016;NIHR, 2020;Oh, 2015;Wright, 2020). Research studies are pivotal to the introduction of interventions into our health systems, and if the methodologies are not sound at a foundational level, it can become a matter of life and death (Rai, 2022) and, if underrepresentation occurred, whether authors practiced disciplinary selfcritique and provided explanations for this shortcoming. Praxis matters in critical race theory, and applying a CRT framework to critical appraisal teaching allows consumers of research to not only name racism, but challenge it in the pursuit for racial equity.…”

“…In addition to genetic or biological claims, researchers may hypothesise 'cultural differences' to explain health inequalities, routinely privileging the voices of majority perspectives for everything from diet to sexual practices (Rai, 2022) without naming specific practices and evidencing their impact. Blaming culture, as with blaming race, blames the patient and assumes that there is little that the health or political system can do to alleviate these inequalities.…”

The Agile Co-production and Evaluation (ACE) framework for developing public health interventions, messaging and guidance

“…[12] This may require innovative approaches to engage with members of these groups, including offering a wider variety of ways in which members of the public can contribute and establishing new forms of long-term partnerships. [13] Long-term reciprocal relationships established prior to emergencies can not only build trust and help to break down 'them/us' barriers but can then facilitate rapid co-production in emergencies. Offering a wide range of digital and non-digital methods (written, oral/aural, visual and in-person) for involving and communicating with members of the public is necessary to meet the needs and preferences of seldom heard members of the population, including people of all ages and with disabilities.…”