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

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.

Represent: A community engagement roadmap to improve participant representation in cancer early detection research: An Oregon case study.

Introduction: While authentic and sustained community involvement in the research process is critically important to making new technologies and interventions effective and socially acceptable, there is uneven participation across sociodemographic, racial, and ethnic communities in many research areas, including cancer early detection research. Currently, 18% of cancer in the United States impacts Hispanics and Latinos, this population accounts for < 10% of research participants. Understanding barriers and facilitators to cancer early detection research is imperative to the ultimate success of this research. Therefore, the objectives of this study were to: understand Hispanic and Latino community perspectives in participation in cancer early detection research; and identify sustainable and mutually beneficial approaches to community engagement and involvement. Methods: The Oregon Case Study, led by Oregon Health & Science University's Community Outreach, Research and Engagement (CORE) in partnership with colleagues at Vocal, a partnership between Manchester University NHS Foundation Trust and the University of Manchester and Cambridge University, adopted a participatory research approach to better understand participation in cancer early detection research from the perspectives of Oregon's Hispanic and Latino community members. We implemented two evidence-based community engagement models, the Community Engagement Studio and the Community Readiness Assessment Model. Using a facilitated format prescribed by each community engagement model, community members helped us to answer two research questions: (1) What methods help us increase participation of underrepresented communities in cancer early detection research?; and (2) How can we build trust between researchers and underrepresented communities within cancer early detection research? Quantitative (i.e., descriptive statistic) and qualitative (i.e., thematic analysis) analytic methods were used to measure and assess community knowledge, leadership, beliefs, and resources regarding participation in cancer early detection research. Results: A total of 36 Hispanic and Latino community members participated in the two community engagement models. We identified three emergent themes pertaining to participation in cancer early detection research that include: low-level awareness of cancer early detection research and opportunities for research participation, structural barriers to research participation, and uncertainty of the benefits of research participation. Conclusion: Our approach, using two evidence-based community engagement models, yielded valuable insights about perceptions of research participation for Hispanic and Latino community members. These findings, synthesized into three key themes, led to actionable recommendations to increase research participation.