Patient Research Partner as an Equal Member of the Research Team: A Personal Experience of the OMERACT Myositis Working Group

Abstract Being diagnosed with myositis changed my life in both bad ways and good. Crucial in those 1 st years was obtaining reliable information, which I did by becoming a member of the patient association and by connecting to other patients. Reading about myositis, sharing experiences with other patients, and meeting physicians and researchers made me realize that my experiential knowledge of living with myositis could be valuable in myositis research. I joined the OMERACT Myositis Working Group as a patient research partner (PRP), a member of a research group who contributes to the patients’ perspective by actively collaborating with researchers as an equal partner. The aim of sharing my experiences as a PRP is to encourage clinical researchers to acknowledge that patients are experts vital to the success of research projects. My narrative provides insights in and practical examples on how, when, and to what extent PRPs can contribute to research. In conclusion, patients provide a unique perspective of lived experience that is complementary to that of clinicians and researchers. Moreover, the relevance and quality of the research process and outcomes improve as a result of patient participation. Engagement of patients strengthens opportunities for the dissemination and implementation of research.