Perspectives of patient and public partners on their involvement in research.

Abstract

Introduction: Patient and public involvement (PPI) in research integrates patient and public perspectives to improve research relevance and quality. The experiences of PPI partners have revealed mixed findings in countries where PPI is well established, but accounts from areas less accustomed to PPI in research are limited. This study aimed to explore the knowledge, motivations, expectations and experiences of PPI representatives in such a setting.

Methods: This was a qualitative study based on semi-structured interviews. Patient and public partners who had recently been engaged in a PPI collaboration to redesign the written patient material for a clinical study were interviewed. The interviews were analysed using inductive content analysis in which quotations were extracted, coded, categorised and interpreted into themes.

Results: Interviews indicated a lack of knowledge concerning PPI in research. Despite their motivation to collaborate, the PPI partners expressed anxiety and doubts about their abilities as laypeople. A sense of societal obligation to collaborate was noted. Groups-based, repetitive sessions fostered productivity, while challenges included off-topic discussions and skepticism.

Conclusions: The findings provide valuable insights for shaping PPI processes and recruitment strategies in regions that are new to PPI. This highlights the need to describe the PPI concept when recruiting participants elaborately and to utilise repetitive group-based sessions in the design.

Funding: Supported by the Novo Nordisk Foundation and the Chief Scientist Office, Scotland.

Trial registration: Not relevant.