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Patient and Public Involvement in Patient-Reported Outcome Measures

Evolution Not Revolution

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Abstract

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.

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Acknowledgments

No sources of funding were used to prepare this article. The authors have no conflicts of interest that are directly relevant to its content. The opinions expressed in the article are those of the authors.

SS and KLH conceived of the article. SS and KLH drafted the initial manuscript. All authors reviewed the article and contributed to the re-write.

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Correspondence to Sophie Staniszewska.

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Key points for decision makers

• The extent of collaborative patient and public involvement (PPI) in patient-reported outcome measure (PROM) development is cursory and often poorly reported

• Discrepancies between patients and clinicians’ views of important outcomes suggest that active collaboration in PROM development should be encouraged

• There is great potential for PPI in all aspects of PROM development, evaluation, and application with patients and the public as active members of the research team, to enhance the quality, relevance, and acceptability of PROMS

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Staniszewska, S., Haywood, K.L., Brett, J. et al. Patient and Public Involvement in Patient-Reported Outcome Measures. Patient 5, 79–87 (2012). https://doi.org/10.2165/11597150-000000000-00000

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