Tackling ‘inverse representation’ through trial, error and triumph across ten research case studies: reflective research practice and autoethnography in the Deep End

Problem

Underserved groups, including those living in poverty and those from ethnic minorities, spend more years with chronic conditions and have worse health outcomes. Socio-cultural characteristics of participants in recent clinical trials demonstrate under- representation of underserved populations. So how did ‘inverse representation’ in research become the norm? A metrices-driven recruitment agenda has dominated research delivery. Funders and research-active organisations may have prioritised efficiency (easier recruitment, low dropout), over rigor (generalisable, representative sampling). Inclusive research, at scale was an emergent field in 2016. A collaboration of patients, community groups, general practices and academics formed a Deep End (DE) Research Collaborative comprising a (DE) Cluster Research network (DECRN) and a DE PPI group (DEPPI)and situated in deprived localities (IMD => 40) serving a 68,000+ ethnically diverse patient population and homeless persons. We hoped to bring inclusive research to the DE, however the external studies offered were culturally incompetent in their approach, ignored health literacy and PPI was tokenistic at best. We therefore started a programme of inclusive research to change the prevailing nihilistic narrative about research with and by underserved communities.

Approach

Reflective research practice was embedded in DERA research, with respectful, facilitated conversations during integrated practitioner-researcher-patient/ public meetings, and supportive near peer co-supervision to support individual and group reflexivity. Our 5-year inclusive research journey allowed iterative adaptations to research approaches to embed power redistribution, participation and tailoring of standard methods to reach patient groups easily ignored. Applying an autoethnographic approach and documentary analysis (research protocols, policy papers) we elicited experiential evidence through collective sense making of what did and didn’t work.

Findings

A DE ‘roadmap’ of methodological approaches to inclusion across ten case studies (qualitative, quantitative, a clinical trial) illustrate the evolution of our practitioner-patient-researcher partnership through attention to positionality, resources, co-design and power imbalance within research teams and the research cycle. Adapting Arnstein’s ‘Ladder of participation’ we reframed public participation and supported researchers to shift all parts of the research cycle towards greater citizen control. We worked with community groups to build trust with racialised minorities and, with humility, learned how to challenge racism and exclusion in research. By ceding power and reallocating research resources we have empowered and trained a socio-culturally diverse cohort of researchers, public contributors, community and early career researchers, to co-create inclusive, accessible research in the Deep End.

Consequences

Using a theory-driven, empowering participatory approach can widen representation of underserved populations. Reflective research practice can shift positionality and create an inclusive methodological paradigm in primary care. Our research group’s mission is to co-create high quality, rigorous research that enables inclusion, diversity, is accessible and relevant to people with lived experience and their practitioners.