PS61 Embedding patient and public involvement and engagement in clinical research: insights from the Family Reported Outcome Measure (FROM-16)

Abstract

Patient and public involvement and engagement (PPIE) in clinical research is becoming a necessary ethical and funding requirement. Embedding PPIE into dermatology research enhances its relevance, quality and impact. The aim of this study was to explore how full integration of PPIE into quality-of-life research concerning the Family Reported Outcome Measure (FROM-16), shaped by patients’ family members’ experiences, guided its high-quality development, validation and use. From the start, we embedded family members and partners of people with health conditions across 26 medical specialties, including dermatology, in the development and psychometric testing of FROM-16, including members of the public and three research partners (two patients, one family member). These research partners were permanent research team members, attending weekly team meetings, codesigning patient-facing documents, and participating in data collection, dissemination and funding applications. Research partners’ involvement was evaluated using the Guidance for Reporting – Involvement of Patients and the Public-2 (GRIPP-2) Short-Form checklist. GRIPP-2 showed the highest level of patient and public involvement in terms of reflecting the key elements of reporting. The PPIE input was crucial in our FROM-16 research projects to create validated score-meaning bands, confirm responsiveness, measure the minimal clinical important difference and map FROM-16 to EuroQol-5D, providing utility values. The research partners challenged our assumptions, enhanced the study design and developed recruitment strategies and dissemination plans. They coauthored all presentations (including this) and publications, increasing research credibility, relevance and impact. Challenges included time pressures and limited resources, successfully managed through frequent online communication and by involving research partners with prior PPIE experience. Inclusive PPIE enhanced the relevance, applicability and acceptability of FROM-16 research. This study demonstrates that PPIE can be successfully embedded in research despite limited resources. It is not enough to involve patients as research subjects: we advocate having patients as research partners across dermatology clinical research.