Men of African ancestry have an increased risk of developing prostate cancer (PrCa) compared to men from other backgrounds, as noted by investigators. The PROFILE study aimed to understand whether genetic information can better target who needs PrCa screening; however, the study has had difficulty in enrolling African or African-Caribbean male populations. Therefore, researchers worked in concert with a group of such men to co-create a video to raise awareness of PrCa risk amongst this community and promote participation in the study. The findings were published in Research Involvement and Engagement.
In this study, researchers recruited seven men of African or African-Caribbean ancestry who completed an initial survey on the Cancer Patients’ Voice platform. Subsequently, they held an online discussion panel and encouraged dialogue to inform the video. Using this participatory approach, ideas for the video were decided by the panel, who comprehensively understood the messaging necessary to reach other men of the same origin.
Based on the panel’s ideas, a barber shop setting was used; leading with a positive case study and highlighting the importance of men’s family members rather than a focus on scientific language, statistics or researchers were all features that were discussed and agreed upon by the panel, the researchers reported. The men shared the video within their networks, and the video was featured on websites and promoted as part of a social media campaign during Black History Month.
“Groups with the greater healthcare needs and the most to gain from advances in care and treatment can often be the most excluded from research participation,” the researchers concluded. “The project gave equal power and decision making to the men and provides an example of successful inclusive involvement. The result was a unique approach to making a study video.”