Kalen Young, Dana Kaminstein, Ana Olivos, Cristina Burroughs, Celeste Castillo-Lee, Joyce Kullman, Carol McAlear, Dianne G. Shaw, Antoine Sreih, George Casey, Vasculitis Patient-Powered Research Network and Peter A. Merkel; Orphanet Journal of Rare Diseases 2019 14:21 doi:10.1186/s13023-018-0969-1
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.
Patient involvement in medical research: what patients and physicians learn from each other