Underserved Deep End populations: a critical analysis addressing the power imbalance in research
Caroline Mitchell, Kate Fryer, Nicola Guess, Habiba Aminu, Ben Jackson, Anna Gordon, Josephine P. Reynolds, Qizhi Huang, Shamanthi Jayasooriya, Rebecca Mawson, Tom Lawy, Emma Linton, Janet E. Brown
Abstract
THE PROBLEMSocial 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. 3Inverse 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. 4Referral 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. 5,6articipation in clinical research has benefits for patients; for example, cancer outcomes are better in patients who participate in clinical trials. 7Interestingly,