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Patient involvement in medical research: what patients and physicians learn from each other

Author information

Young K1, Kaminstein D2, Olivos A2, Burroughs C3, Castillo-Lee C1, Kullman J1, McAlear C4, Shaw DG1, Sreih A4, Casey G1; Vasculitis Patient-Powered Research Network, Merkel PA5. Orphanet J Rare Dis. 2019 Jan 24;14(1):21. doi: 10.1186/s13023-018-0969-1. Collaborators (13) Abonia PJ, Aines N, Brown P, Cardone A, Fernandez M, Fingar J, Gorman C, Hakkarinen I, Hatfield S, Hennessy S, Jacobsen P, Kermani T, Vennitti M.

Abstract

Author information 1 Vasculitis Foundation, Kansas City, MO, USA. 2 Organizational Dynamics, Liberal and Professional Studies, University of Pennsylvania, Philadelphia, PA, USA. 3 Data Management and Coordinating Center (DMCC), University of South Florida, Tampa, USA. 4 Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, USA. 5 Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, White Building, 5th Floor 3400 Spruce Street, Philadelphia, PA, 19104, USA. pmerkel@upenn.edu.

Abstract

BACKGROUND: There is increasing interest in actively involving patients in the process of medical research to help ensure research is relevant and important to both researchers and people affected by the disease under study. This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare disease research network, to better understand what investigators and patients learned from working on research teams together.

METHODS: Qualitative interviews were conducted by phone with patients, physician/PhD-investigators, and study managers/staff who participated in the network. The question guiding the interviews and observational analysis was: "What have investigators and patients learned about working together while working on VPPRN teams?" Interview transcripts were analyzed in combination with observations from multiple in-person and telephone meetings.

RESULTS: Transcripts and notes were reviewed and coded from 22 interviews conducted among 13 patient-partners, 5 study managers/staff, and 4 MD or PhD-investigators, and 6 in-person and 42 telephone/web-conference meetings. Patient-partners and investigators characterized their working relationships with one another, what they learned from their collaborations, and provided recommendations for future teams of patient-partners and investigators. Major themes included the great benefits of communicating about activities, being open to listening to each group member, and the importance of setting reasonable expectations.

CONCLUSIONS: Direct engagement in research design and development by patient-partners and co-learning between investigators and patient-partners can result in a positive and productive working relationship for all members of a medical research team. This bi-directional engagement directly benefits and impacts research design, participant recruitment to studies, and study subject retention.