Patient and Public Involvement in Patient-Reported Outcome Measures Evolution Not Revolution

• Published in: The patient : patient-centered outcomes research Vol. 5; no. 2; pp. 79 - 87
• Main Authors: Staniszewska, Sophie, Haywood, Kirstie L., Brett, Jo, Tutton, Liz
• Format: Journal Article
• Language: English
• Published: Cham Springer International Publishing 01.06.2012
• Subjects: Cooperative Behavior; Current Opinion; Health Administration; Health Economics; Health Services Research - methods; Humans; Interviews as Topic; Medicine; Medicine & Public Health; Patient Compliance; Patient Participation; Patient Preference; Pharmacoeconomics and Health Outcomes; Public Health; Quality of Health Care - organization & administration; Quality of Life Research; Reproducibility of Results; Self Report; Treatment Outcome; Collaborative Form; Minimal Important Change; Prom Development; COSMIN Checklist; Public Involvement
• ISSN: 1178-1653; 1178-1661
• DOI: 10.2165/11597150-000000000-00000

This paper considers the potential for collaborative patient and public involvement in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs). The development of PROMs has followed a well trodden methodological path, with patients contributing as research subjects to the content of many PROMs. This paper argues that the development of PROMs should embrace more collaborative forms of patient and public involvement with patients as research partners in the research process, not just as those individuals who are consulted or as subjects, from whom data are sourced, to ensure the acceptability, relevance, and quality of research. We consider the potential for patients to be involved in a much wider range of methodological activities in PROM development working in partnership with researchers, which we hope will promote paradigmal evolution rather than revolution.