Embedding patient and public involvement: Managing tacit and explicit expectations.

Area of Science:

• Gerontology
• Sociology of Health and Illness
• Research Methodology

Background:

• Patient and Public Involvement (PPI) is increasingly mandated in research funding and dissemination.
• There's an unexamined assumption that PPI inherently improves research integrity and quality.
• This study critically examines the practical implementation of PPI.

Purpose of the Study:

• To critically evaluate the implementation of patient and public involvement (PPI) activities.
• To explore co-research in a program focused on enhancing independence for people with dementia.
• To identify and analyze theoretical and moral challenges within PPI.

Main Methods:

• Utilized critical case studies to examine PPI implementation.
• Case 1: Explored challenges of multiple PPI roles (co-applicant, advisor, co-researcher).
• Case 2: Examined tensions between carer co-researcher support and objective interviewing.
• Case 3: Analyzed co-research data coding and interpretation with people with dementia.

Main Results:

• PPI can empower volunteers and improve research relevance and quality.
• PPI implementation is complex, socially constructed, and yields variable outcomes.
• Challenges arose from conflicting roles, moral imperatives in supporting participants, and defining co-researcher analysis versus PPI validation.

Conclusions:

• Patient and Public Involvement (PPI) is not a universal solution for research relevance or accessibility.
• The effectiveness and nature of PPI are context-dependent and require careful consideration.
• Acknowledging and addressing the complexities of PPI is crucial for successful integration into research.