The experience of patient partners in research: a qualitative systematic review and thematic synthesis

Abstract

Plain English summary Patient engagement is the practice of involving patients as partners in research teams. Through these partnerships, patients become co-researchers, which promotes patient-centered research. In recent years, this practice has quickly gained popularity and is now encouraged by scientific funding bodies. This financial incentive to engage patients helps to promote the practice but can lead to tokenistic partnerships. Therefore, it is important to understand how patient-partners experience engagement in research. This systematic review aimed to describe the experience of patient-partners in research by synthesizing existing studies on the subject. 41 relevant studies were found, which described seven general themes in patient-partners’ experience. These themes were “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Within these themes, many positive experiences were described, such as the stimulating intellectual challenges of research, or the pride of helping others. Negative experiences were also identified, such as when patient-partners felt inadequately prepared for research activities, or when hierarchies of powers were formed. These findings will allow future research teams to improve patient engagement and will hopefully lead to better experiences for patient-partners.

Keywords

• Patient and public involvement
• Patient engagement
• Experience
• Qualitative research
• Systematic review