Evolution of a video project to translate research findings about patient experiences into improved clinical care.

BACKGROUND: People living with HIV are at an increased risk of developing cancer. Cancer health professionals could benefit from improving and updating their knowledge of HIV and their understanding of patient experiences to deliver high-quality, patient-centred care. AIMS: Evidence-based educational resources to improve patient care were identified and developed using a co-production approach. METHODS: There were two stages: a workshop discussion by experts to reach consensus on a priority intervention; and co-production of video content Life with HIV and Cancer. FINDINGS: The consensus of the expert group was that video content featuring first-person accounts would be the most impactful intervention to address the gap in knowledge. Three co-produced and professionally made video resources were developed and disseminated. CONCLUSION: The videos provide insight into the impact of stigma as well as current information on HIV. Their use can improve oncology clinical staff knowledge and better equip them to provide patient-centred care.

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.

BACKGROUND: Men of African ancestry are at increased risk of developing prostate cancer (PrCa) compared to men from other backgrounds. The PROFILE study aims to understand whether genetic information can better target who needs PrCa screening. PROFILE has so far had difficulty reaching men of African or African -Caribbean ancestry to take part. In this involvement project we worked in partnership 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. METHODS: We recruited seven men of African or African-Caribbean ancestry who completed an initial survey on the Cancer Patients' Voice platform. We then held an online discussion panel and maintained contact to encourage dialogue and planning of the video. Utilising a participatory approach, the ideas for the video were decided in collaboration with the panel who held expert knowledge of various communities and understood the messages that would best resonate and engage with other men of the same origins. Once the video had been edited and finalised, two members of the group expressed interest in writing up the project and are listed as co-authors. RESULTS: The video in its entirety was driven by the panel's ideas. The choice of a barber shop setting; 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 men shared the video within their networks. It was placed on websites and promoted as part of a social media campaign during Black History Month. CONCLUSIONS: 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. This is pertinent in PrCa research where men of African or African-Caribbean ancestry are at greater risk. 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.

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.

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.