Abstract: Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.
Authors: Frederike Brockhoven & Maya Raphael, Jessica Currier, Christina Jäderholm, Perveez Mody, Jackilen Shannon, Bella Starling, Hannah Turner-Uaandja, Nora Pashayan & Ignacia Arteaga
Below, you can watch four videos introducing the project and illustrating the key elements of these recommendations across three larger practice areas.
- REPRESENT RECOMMENDATIONS (1): Improving participation in cancer early detection research
- REPRESENT RECOMMENDATIONS (2): Making clinical research mutually beneficial
- REPRESENT RECOMMENDATIONS (3): Outreach and recruitment practices
- REPRESENT RECOMMENDATIONS (4): Communication and support
Acknowledgements: This work was supported by the International Alliance for Cancer Early Detection, an alliance between Cancer Research UK [EICEDAAP\100011], Canary Center at Stanford University, the University of Cambridge, OHSU Knight Cancer Institute, University College London and the University of Manchester. The Philomathia Foundation and Robinson College, Cambridge supported Ignacia Arteaga’s work and made possible the production of these videos.