REPRESENT: Community Engagement Roadmap to Improve Participant Representation in Cancer Research Early Detection

REPRESENT is a pilot study seeking to inform recommendations to improve participant representation in cancer early detection research. It is funded by the International Alliance for Cancer Early Detection (ACED), and co-directed by Dr Ignacia Arteaga (U. of Cambridge) together with Professors Nora Pashayan (UCL), Jackilen Shannon (OHSU), and Bella Starling (VOCAL). We have been exploring the following guiding questions: (1) How can all communities be included in early detection cancer research? (2) How can trust be built between early detection cancer researchers and communities? To answer those questions, this year-long multidisciplinary project included the development of two case studies at two clinical research engagement and outreach centres in Manchester (UK) and Oregon State (USA). This is combined with a knowledge exchange component between engagement professionals working at the different regional centres to foster reciprocal learning. In parallel, some members of the 12-strong team are completing a systematic literature review on the topic of increasing diversity in early detection cancer research.

We discussed the results of those activities in an online consensus-building workshop that took place between 17-22 June 2022, which brought together researchers, health professionals, community engagement practitioners, as well as public contributors. With the project drawing to a close, we seek to identify key priorities and recommendations to improve diversity, inclusion and trustworthiness in early cancer detection research to inform funding agencies, clinical research infrastructures and community engagement practitioners. We plan to disseminate this and other project outputs in the next several months to start addressing the disconnect between ‘engagement’ as it is seen by clinical researchers and what we could consider as a ‘true partnership’ with underserved groups in the UK and the USA.

The following short video illustrates some key elements of this year-long multidisciplinary research study.

Video Credit: Video animation created by Anna Borowka and funded by the Philomathia Foundation. This creative collaboration was part of the research fellowship held by Ignacia Arteaga at the University of Cambridge.