How can we recruit more men of African or African-Caribbean ancestry into our research? Co-creating a video to raise awareness of prostate cancer risk and the PROFILE study

Abstract

Plain English summary This project involved working in partnership with men of African or African-Caribbean ancestry to co-create a video intended to raise awareness of prostate cancer (PrCa) risk and promote participation in a genetic screening study called PROFILE. Men of African or African-Caribbean ancestry are at increased risk of developing PrCa compared to other men. The PROFILE study aims to understand whether genetic information can better target who needs PrCa screening. The study has had problems recruiting men from these communities. Methods: We engaged seven men of African or African-Caribbean ancestry: three PROFILE study participants and four from the Race, Ethnicity and Cultural Heritage (REACH) staff forums across the Royal Marsden Hospital and the Institute of Cancer Research. They completed a survey, joined an online discussion panel and we continued working together. The group decided on the structure and content of the video; to include a PrCa survivor who had been successfully screened and treated early for his disease, and a daughter of one of the panellists. The men were also involved in the dissemination plans of the finished video, and two agreed to be co-authors of this paper. Findings: Features of the video led by the men included the choice of a barber shop setting; leading with a positive shared story and highlighting the importance of family rather than science, statistics or researchers. Dissemination: The group shared the video within their networks. It was placed on websites and promoted as part of a social media campaign during Black History Month.

Keywords

• Patient and public involvement
• Inclusion
• Diversity
• Prostate cancer
• Co-creation