Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey

BACKGROUND: Those whose lives are most directly impacted by health care—patients, caregivers, and frontline staff—are ideally situated to improve patient health care services and care quality. Despite a proliferation of literature on both Patient and Public Involvement (PPI) and clinical quality improvement (QI), concrete strategies regarding how to involve patients remain elusive. AIM: Research suggests catalyst films, comprised of rigorously-analyzed interview data from diverse patients about their experiences with health and health care (“catalyst films”) are a promising way to bring actionable patient feedback to QI. To date, such films have been crafted primarily by researchers. This project aimed to inform the science of engagement through analyzing how deliberate PPI informed the process of creating catalyst films. METHODS: PPI methods included: research team norming activities through a project charter and role delineation process; key informant interviews; participant-ambassador videotaped interviews; clinician and research focus groups; and inclusion of advisors on the research team. Content studied for the analysis presented here included team meeting notes, interview and focus group transcripts, and documentation from a facilitated discussion about team processes. These data were analyzed to determine the impact of our PPI process. Member checking verified themes and lessons learned. RESULTS: PPI shaped team deliberations and final products in substantial ways, including: what material to include in catalyst films and the tone they should convey; multiple issues regarding representation; and our collective understanding of how catalyst films could be used in the United States. Specific discussions addressed: how to include the optimal mix of interview segments that describe experiences with those that more directly point towards care improvement strategies; and how to balance positive and negative feedback from patients about experiences with care. Team process issues included ensuring equity in involvement despite team members having differing and sometimes multiple roles that complicated power dynamics and processes. CONCLUSIONS: Multiple forms and degrees of PPI resulted in significant influence on catalyst films and companion materials. Our project thus provides proof of concept for PPI in creation of video products for QI which have traditionally been crafted by researchers. The model we developed, and document in this paper, can be adapted by others creating research-derived video products. Our findings can also inform future research on how co-designing catalyst films enhances their value for QI and the application of co-designed catalyst film use in QI. Lastly, it can guide those engaged in QI and medical education in their selection of film products focused on patient experiences. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-022-00369-3.