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Patient and public involvement in the design and conduct of a PhD research project: rationale, process, outcomes and lessons learned

Ryan, Ciara

Authors



Abstract

Patient and public involvement (PPI) is crucial to and increasingly mandated in intervention development to ensure relevance, effectiveness and acceptability. Despite this, systematic implementation guidance remains scarce, particularly regarding equitable collaboration throughout all research stages:

This research provides an original example of how individuals with stroke-related visual impairment (SRVI) were involved throughout the design of a self-management intervention. Ethical approval was granted and three PPI advisors living with different forms of SRVI were purposefully sampled. PPI was prospectively planned in a mixed-methods systematic review, a qualitative interview study and an intervention mapping study. A bespoke PPI evaluation form was co-produced and completed at the end of each study to optimise involvement in the subsequent study.

Activities encompassed consultations, recruitment assistance, piloting procedures and analytical interpretations.PPI engagement fostered integration of invaluable experiential insights, like emotional support necessities, services navigation struggles and accessibility barriers.

Collaborative discussions facilitated the identification of key research questions, interpretation of qualitative data and refinement of intervention components. Despite the positive impact, concerns regarding social desirability and confirmation bias as well as power imbalances require further exploration. Through sharing expertise, advisors gained ownership and their priorities shaped intervention outcomes.

This collaborative approach to PPI can enhance the effectiveness and implementation of interventions. This practical case study provides invaluable guidance on PPI integration, planning, facilitation and assessment within complex intervention development. Ongoing critical reflexivity may further enhance equitable, empowering PPI partnerships.

Citation

Ryan, C. (2024, June). Patient and public involvement in the design and conduct of a PhD research project: rationale, process, outcomes and lessons learned. Paper presented at Royal College of Occupational Therapy Conference 2024, Online

Presentation Conference Type Conference Paper (unpublished)
Conference Name Royal College of Occupational Therapy Conference 2024
Start Date Jun 12, 2024
End Date Jun 13, 2024
Deposit Date Jun 12, 2024
Peer Reviewed Peer Reviewed