Developing and evaluating guidelines for patient and public involvement (PPI) in research.

Area of Science:

• Health Services Research
• Qualitative Research Methodology
• Patient and Public Involvement (PPI)

Background:

• Understanding patient and public involvement (PPI) in research design is underdeveloped.
• Existing literature highlights both benefits and challenges of PPI in research.
• This study addresses the need for better understanding of PPI in the research design phase.

Purpose of the Study:

• To report learning experiences from involving service users as research partners.
• To develop and evaluate guidelines for good practice in PPI research.
• To assess the fitness for purpose of the developed PPI guidelines.

Main Methods:

• Developed PPI research guidelines through workshops with diverse stakeholders (service users, patients, carers, professionals, academics).
• Employed a participatory qualitative approach for guideline development.
• Evaluated guidelines by mapping them against service user research partners' experiences in a separate project.

Main Results:

• The developed PPI guidelines were found to be fit for purpose, facilitating problem identification and standard adherence.
• Both academic and service user research partners acquired relevant skills.
• Service user research partners reported unexpected enhancements in their daily living skills.

Conclusions:

• PPI guidelines developed through multi-stakeholder consensus are effective.
• Involving service users as research partners yields unanticipated personal benefits.
• The study provides valuable insights into practical PPI implementation in research.