Underserved ‘Deep End’ populations: a critical analysis addressing the power imbalance in research

[摘要] THE PROBLEM Social inequalities are driven by power, income, and wealth, and shape health inequalities. The ‘inverse care law’ has enduring relevance to UK primary care. Underserved groups, including those living in poverty and those from ethnic minorities, spend more years with chronic conditions, have worse health outcomes, and poorer access to health care.1 It is self-evident that clinical research should generate results that are generalisable to the whole population.2 So why is ‘inverse representation’ in research the norm? The sociodemographic characteristics of participants in recent clinical trials suggest a mismatch with the representation of underserved populations, especially ethnic minorities.3 Inverse representation in research may be driven by discriminatory exclusion criteria that limit participation. This article focuses on researcher power, whereby researchers exercise control and influence inclusion in research, and suggests a theory-driven, empowering participatory approach to widen representation of underserved populations.Commissioners of research, universities, and organisations that support recruitment may have prioritised efficiency (easier recruitment and lower attrition) over rigour (generalisable, representative sampling) and likelihood of implementation in all settings. Incorporation of flawed clinical trial evidence into clinical guidelines could widen health inequalities by shifting resources towards those interventions that work in populations at the lowest risk of poor outcomes. The prevalence of type 2 diabetes mellitus (T2DM) is significantly higher in ethnic minority and socioeconomically deprived populations; however, research that underpins a group education intervention (DESMOND) for people with T2DM recruited mostly White British people (94%) and did not report deprivation data.4 Referral activity to group education sessions for people with T2DM is incentivised by the UK GP Quality and Outcomes Framework, but uptake of these sessions in areas of high socioeconomic deprivation and among ethnic minorities is poor.5,6Participation in clinical research has benefits for patients; for example, cancer outcomes are better in patients who participate in clinical trials.7 Interestingly, exposure of discrimination (by race, income, and sexual orientation) during recruitment to early clinical trials for HIV treatment galvanised excluded communities to demand fair access to trial participation.8 A powerful counterargument to participation in research for underserved groups includes the shameful, unethical abuse of power by researchers in a catalogue of historical injustices, such as the Tuskegee syphilis cohort study.9 Understandably there may be a lack of trust in public and private institutions in the UK that have a legacy of structural racism, classism, homophobia, transphobia, disablism, and colonialism. Recent migrant populations may have additional concerns related to coercive healthcare practices in their country of origin.10Primary care researchers usually work within formal research delivery structures, such as the National Institute for Health and Care Research (NIHR) GP clinical research networks (CRNs) in England. Research demonstrates significant geographical variation in research activity across CRNs with disproportionately low recruitment in areas with a higher prevalence of chronic health conditions, perhaps reflecting the barriers to participation for underserved groups highlighted in the NIHR ‘INCLUDE’ guidance.11,12 These barriers included a lack of communication between research teams and participant groups, studies that exclude by design (for example, fail to recognise differential health literacy), a mismatch between researcher and participant agendas, and a lack of trust. One of four goals to increase inclusive representation in research was to build long-term relationships with underserved groups.

[学科分类] 卫生学