Cancer early detection research priorities in some underrepresented communities: a commentary of the learnings from a community priority setting project

Priority setting partnerships for health and social care, which aim to unite patient, professional and other stakeholder priorities for research don’t always accurately reflect the views of underrepresented communities. Few have utilised community engagement methods. We expanded on an existing James Lind Alliance Priority Setting Partnership that asked patient, public and professional stakeholders what their top 10 research priorities were in cancer early detection. We worked with community partners to design and deliver an accessible and equitable community-based priority setting project that sought to understand the cancer early detection research priorities amongst underrepresented communities in Greater Manchester. This article reflects on and shares recommendations for future PSPs where community-led participatory methodologies are being considered. Participatory research priority setting activities were undertaken in four community sessions. Community-led activities with four partner community organisations were delivered across separate community ranking workshops involving 39 community members (92% Black, Asian and other ethnicities) and one action-planning workshop with 20 stakeholders, which brought community members, researchers, and community engagement practitioners together. Engagement methods were co-designed with community partners following recommendations from a power-sharing toolkit. This community PSP project developed a revised top 10 priority list for cancer early detection research along with new research ideas. An inclusive research action plan was co-developed to address key themes from across the workshops. The project empowered community members who had never been involved in health research before to contribute to research developments, to learn about health research, and become engaged within local community centres. Future projects considering the use of community engagement and co-production methods should ensure activities are co-developed with the relevant community-partner stakeholders and that there is enough opportunity to develop reciprocal relationships between researchers, organisations and members of the community. Community engagement approaches to priority setting are valuable methods for engaging with underrepresented communities. Reciprocity and community-benefit should be at the forefront of these projects. We suggest a method for how future partnerships might choose to co-deliver community engaged priority setting. Priority setting partnership (PSP) projects in health and social care research aim to bridge the gap between what members of the public feel is important compared with healthcare professionals, researchers and other stakeholder organisations. In 2019, a cancer early detection research PSP project was published in Lancet Public Health, which included a ranked top 10 list of research priorities for cancer early detection. This commentary article describes a follow-up community PSP that builds on the original PSP and aims to deliver an inclusive community-driven approach for priority setting in some underrepresented communities in Greater Manchester, England. This project was delivered in a collaboration with Vocal – an organisation which brings together people and health research for everyone’s benefit - and researchers from the National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre (BRC) Cancer Prevention and Early Detection Theme. Working with local community partners, we engaged with underrepresented communities who were not previously involved in the 2019 PSP and asked them to rank and prioritise what was important to them in cancer early detection. We used a community-engagement approach, co-producing and co-delivering workshops in local community settings. In this commentary, we reflect on our experiences of developing and delivering this alternative approach to research priority setting, which followed principles of power sharing, reciprocity, co-production, participatory methods and community-engagement. We share our lessons learned from the project and suggest ways in which future projects may wish to adopt this approach.