How to become partners. Ways to enhance the quality of patient and public involvement in healthcare research.

Abstract

There is a growing emphasis on involving patients and the public in healthcare research. This is especially true in qualitative healthcare research, where partnerships are encouraged between patients with lived experiences and researchers with academic expertise. The rationale is that collaboration can enhance the study's relevance to healthcare users and improve the research quality. However, establishing partnerships can be complex and challenging, requiring negotiation and alignment of expectations. In a qualitative study exploring communication in clinical encounters at a Danish university hospital, we invited patients and relatives to become involved in research. This commentary discusses the challenges, insights, and adjustments to our research design that emerged from the process. Through continuous dialogues with various patients and relatives, we, as researchers, gained a deeper understanding of how to make our research relevant to patients and relatives and how to approach involving patients and relatives in our research. By emphasizing the significance of these dialogues, we aim to demonstrate how aligning expectations and building partnerships with patients and relatives resulted in valuable learning experiences for the researchers and considerably impacted the study's design. Furthermore, we want to highlight that building partnerships requires time, flexibility, and a mutual learning approach to negotiate and align expectations effectively. In this commentary we first review the practice of involving patients and the public in healthcare research and provide an overview of the study's context. Next, we outline our efforts to negotiate and align expectations with patients and relatives, highlighting how new insights led to adjustments to the research design. Finally, we address challenges and the requirements researchers face when involving patients and the public in research partnerships.