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.

Understanding who is and isn't involved and engaged in health research: capturing and analysing demographic data to diversify patient and public involvement and engagement.

BACKGROUND: Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society. Yet, there are currently no routine systems or requirements to collect or analyse the demographics of people who get involved in health research in the UK. The aim of this study was to develop to capture and analyse the characteristics of who does and doesn't take part in patient and public involvement and engagement (PPIE) activities. METHODS: As part of its strategic focus on diversity and inclusion, Vocal developed a questionnaire to assess the demographics of people taking part in its PPIE activities. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. The questionnaire was implemented across Vocal activities between December 2018 and March 2022. In that time. Vocal was working with approximately 935 public contributors. 329 responses were received: a return rate of 29.3%. Analysis of findings and comparison against local population demographic data, and available national data related to public contributors to health research, was performed. RESULTS: Results show that it is feasible to assess the demographics of people who take part in PPIE activities, through a questionnaire system. Further, our emerging data indicate that Vocal are involving people from a wider range of ages and with a greater diversity of ethnic backgrounds in health research, as compared to available national data. Specifically, Vocal involves more people of Asian, African and Caribbean heritage, and includes a wider range of ages in its PPIE activities. More women than men are involved in Vocal's work. CONCLUSION: Our 'learn by doing' approach to assessing who does and doesn't take part in Vocal's PPIE activities has informed our practice and continues influence our strategic priorities for PPIE. Our system and learning reported here may be applicable and transferable to other similar settings in which PPIE is carried out. We attribute the greater diversity of our public contributors to our strategic priority and activities to promote more inclusive research since 2018.

Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society. Yet, there are currently no routine systems or requirements to collect or analyse the demographics of people who get involved in health research in the UK. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. Since 2018, one of Vocal's strategic priorities has been to promote inclusive research by diversifying those who are engaged and involved in research, through the development of more inclusive ways of working together, including methods to understand who is (and isn't) currently involved in Vocal's PPIE activities. We find that it's feasible to capture and analyse demographic data related to PPIE. Further, our emerging data indicate that we are involving people from a wider range of ages and with a greater diversity of ethnic backgrounds in PPIE for health research, as compared to available national data. However, similarly to national trends, more women than men are involved in PPIE work.

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.