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Public and Patient Involvement and Engagement in Clinical Trials: A Multi-Perspective Mixed-Methods Evaluation of the
Blerina Kellezi1,2, Heather Peacock2, Trevor Jones2
1Department of Psychology, Nottingham Trent University, Nottingham, UK.
Summary
Patient and public involvement and engagement (PPIE) significantly enhanced a complex vocational rehabilitation trial for traumatic injury survivors. This study highlights PPIE’s value in research design, data collection, and dissemination, despite some engagement challenges.
Area of Science:
- Health Services Research
- Rehabilitation Medicine
- Clinical Psychology
Background:
- Systematic evaluation of patient and public involvement and engagement (PPIE) in complex, multi-year health research trials is limited.
- PPIE offers substantial benefits for research design, delivery, and dissemination.
Purpose of the Study:
- To describe and evaluate patient and public involvement and engagement (PPIE) within a large-scale, multisite, longitudinal vocational rehabilitation research program.
- To explore the scope, impact, and lived experiences of PPIE members across all research phases.
Main Methods:
- Multi-perspective evaluation of PPIE within the ROWTATE research program (2019-2026).
- Utilized open-ended surveys with PPIE members and researchers, a 'You Said, We Did' log, and meeting minutes.
- Investigated PPIE member motivations, contributions, personal impact, and engagement facilitators/barriers.
Main Results:
- PPIE significantly enhanced study relevance, data collection, communication, and intervention components (rehabilitation, clinical psychology, health economics).
- PPIE members reported purpose and engagement, while researchers valued contributions and the collaborative experience.
- Both groups identified barriers and facilitators to effective PPIE.
Conclusions:
- Inclusive, supported, and transparent PPIE practices are crucial for complex health research.
- This evaluation offers novel insights into PPIE's role in clinical psychology and health economics within traumatic injury recovery research.
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