Establishing a standing patient advisory board in family practice research: A qualitative evaluation from patients' and researchers' perspectives.

ABSTRACT

INTRODUCTION: Patient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. METHODS: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. RESULTS: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange' They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. CONCLUSION: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. PATIENT OR PUBLIC CONTRIBUTION This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.