Mobilising Knowledge on Breast Cancer Amongst Black and Afro‐Caribbean Women: A Co‐Design Project in the West Midlands, England

Black and Afro‐Caribbean women are more likely to be diagnosed before the age of 45 with breast cancer and are more likely to be diagnosed with metastatic disease, with poorer survival rates than white women. Yet not enough is known about why there is a delay in breast cancer help‐seeking behaviour from Black communities. The aim of this study was to understand the barriers, stigma and attitudes to early breast screening decisions amongst Black and Afro‐Caribbean women, as prescribed by the project funders. A co‐design methodology underpinned by the Discover, Define, Develop and Deliver was employed across a system known for its ethnic diversity and health inequalities. Three phases of engagement and product development involved working with trusted community leaders from 8 voluntary community sector organisations (VCSOs) over a 14‐month period. Collective community narratives were co‐created via facilitated listening events in Phase 1, incentivised work, co‐creation workshops in Phase 2 and product development in Phase 3. Partnership working was achieved with the key stakeholders: the 8 community leaders, representing their VCSO, the local NHS integrated care service, inequality lead staff and professional cancer nurses. Thematic Analysis was adopted for this project. Findings from the project revealed multicultural taboos, religious stigma, lack of understanding of NHS breast screening services and poor access experiences. This collective experience was captured, reaffirmed by the VCSO Leaders, and formed the basis of 3 Co‐designed products developed in the second and third study phases. Effective collaboration is demonstrated between the Cancer Leads, the NHS organisation and the Community Leaders themselves. Effective system‐wide community engagement can provide a pathway to potential altered decision‐making in under‐represented communities on breast cancer. Co‐design can structure work through a transactional approach, mobilising impactful new knowledge on topics of health importance to diverse communities at a regional and international level.