REPRESENT recommendations: improving inclusion and trust in cancer early detection research

Abstract

Acknowledgements: The recommendations and the content of this manuscript were developed with the contributions and feedback of Prajakta Adsul, Allison Allam, Emily Arteaga, Sarah Bellhouse, Mayra Benitez, Chris Brew-Graves, Rachel Broadbent, Grace Curran, Elspeth Davies, Jan Davies-Oliveira, Sally Devine, Beverly Emerson, Umar Iqbal, Esmey Javier Ramirez, Emma Hainsworth, Karolin Kroese, Parag Mallick, Sinduja Manohar, Grace McCorkle, Eva McGrowder, Sarah Mekonnen, Diana Potts, and Emma Thorpe. With special thanks to Grace McCorkle and Mayra Benitez, who functioned as community advisors throughout the project.Funder: 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.Funder: 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.AbstractDetecting 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.</jats:p

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