REPRESENT is a Community Engagement Roadmap to Improve Participant Representation in Cancer Research Early Detection.
UCL: Nora Pashayan and Frederike Brockhoven
OHSU: Jackie Shannon, Jessica Currier and Christina Jaderholm
Vocal: Bella Starling and Hannah Turner-Uaandja
Community advisors: Grace McCorkle (UK) and Mayra Benitez (USA)
We have been exploring the following guiding questions:
- How can all communities be included in early detection cancer research?
- How can trust be built between early detection cancer researchers and communities?
The project includes the development of two case studies in community engagement and outreach centres in Manchester (UK) and Oregon State (USA) that are combined with a knowledge exchange component between professionals working at those centres to facilitate reciprocal learning. In parallel, some members of the team are completing a systematic literature review.
We discussed the results of those activities in an online consensus-building workshop that took place between 17-22 June 2022. It brought together researchers, health professionals, community engagement and outreach practitioners, as well as public contributors.
In the next two months, we will identify key priorities and recommendations to improve diversity, inclusion and trustworthiness in early cancer detection research.
We plan to disseminate this and other project outputs in the next few months across the various communities and stakeholders we are working with.
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 as a ‘true partnership’ with communities in the UK and the USA.
This project is funded by the International Alliance for Cancer Early Detection (ACED), and co-directed together with Professors Nora Pashayan (UCL), Jackilen Shannon (OHSU), and Bella Starling (VOCAL).
Publications (open access):
- Recommendations to improve inclusion and trust of minoritised groups in cancer early detection research (BJC). https://www.nature.com/articles/s41416-023-02414-8
- Oregon case study (Frontiers in Public Health): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10020373/?report=reader
Learn how to improve inclusion and trust among minoritised groups in early cancer detection research
Read about our recommendations statement, watch videos and more.