REPRESENT: Building trust and trustworthiness in early cancer detection research

Together with co-investigators from UCL, OHSU and Manchester, I will be leading REPRESENT: A Community Engagement Roadmap to Improve Participant Representation in Cancer Research Early Detection. Funded by the International Alliance for Cancer Early Detection (ACED), I will be working together with renowned academics in Public Health, Epidemiology, Medicine, Genomics, Social Sciences and Public Involvement to explore how and whether community engagement approaches facilitate trust-building between cancer detection researchers and ‘underserved’ communities, and what opportunities can be fostered to negotiate the values of clinical research for some of the publics that biomedical stakeholders have historically wronged.

My hope is that, through this year-long multidisciplinary project, we can start addressing the disconnect between ‘engagement’ as it is seen by clinical researchers and what we could consider a ‘true partnership’ with communities in the UK and the USA.

PROJECT SUMMARY:

Members of the public are at the heart of any early cancer detection effort; they are pivotal to make early cancer detection approaches socially acceptable and to increase the uptake of detection technologies. Yet, previous studies show uneven rates of participation in cancer research across sociodemographic and protected characteristics, with institutional and workforce barriers related to cultural competence generating an important challenge. Authentic and sustained community engagement between health research centres and those communities is therefore necessary to improve diversity in cancer early detection research. Informed by published research toolkits (e.g. NIHR INCLUDE, EoE CLAHRC, THIS PPI), this multidisciplinary study seeks to address the underrepresentation of underserved groups in early cancer detection research by advancing a sustainable and mutually beneficial approach to community engagement and involvement. Through consensus-building and participative techniques with community representatives and experts, we will co-design fieldwork activities, evaluate two case studies at OHSU and Manchester, and discuss approaches that improve the science and the health outcomes of people from all possible backgrounds. Identifying transferrable mechanisms across different community engagement approaches, we will design a “roadmap” that is respectful of regional realities to help us fostering trustworthy research partnerships across ACED Centres.

As part of this collaboration, I plan to carry out fieldwork in Manchester (UK) and Oregon State (USA) during 2022. I seek to critically examine ethnographic examples from laboratories, outreach efforts and policy documents to tease out what it means and what it takes to ‘engage’ with local communities in healthcare, and how ‘biomedical progress’ might look like when it is seen beyond patients’ medical submission and compliance. This analysis hopes to contribute to the redefinition of ideas of ‘genomic justice’ after the Covid-19 pandemic and the Black Lives Matter movement.

Published by Ignacia

Research associate in Social Anthropology at the University of Cambridge

%d bloggers like this: