[A qualitative interview study to streamline integration of patient participation in research].

Abstract

Integration of the patient perspective in research projects is essential to strengthen the relevance and quality of research results. In order to rectify the lack of structured procedures for patient integration in German research projects, this study summarises the currently available knowledge in a simplified practice-oriented checklist for researchers.Through 13 semi-structured qualitative interviews conducted with members of a research group in December 2022, this study explored patient participation possibilities and barriers. The inductive-deductive coding and analysis in the software MAXQDA led to a standardized checklist development for seamless patient integration across similar contexts and research fields.Of 13 experts, nine researchers (69%) incorporated patient insights into their work, covering topics, concepts, focus prioritization, and study materials. Four researchers (31%) faced barriers due to the absence of guidelines. More than 90% recognized potential for patient integration in topic prioritization, concept formation, evaluation, result review, and interpretation. Researchers highlighted barriers such as patient's limited scientific basis, restricted access, and knowledge gaps in patient interaction. Among the respondents, 56% pointed to training needs and 44% to structural barriers such as workload, unclear funding, guidelines and stakeholder involvement. The resulting checklist includes six sub-categories, each with an average of four sub-items, which operationalise the integration process.Current research lacks effective patient inclusion processes due to inadequate access, tools, and knowledge. While immediate training can address some challenges, longer-term changes in policy and funding are necessary. With the new checklist, researchers receive a support tool to integrate the patient perspective in their projects in a systematic manner.