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Patient and Public Involvement in Patient-Reported Outcome Measures

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  • Sophie Staniszewska
  • Kirstie Haywood
  • Jo Brett
  • Liz Tutton

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. Copyright Adis Data Information BV 2012

Suggested Citation

  • Sophie Staniszewska & Kirstie Haywood & Jo Brett & Liz Tutton, 2012. "Patient and Public Involvement in Patient-Reported Outcome Measures," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(2), pages 79-87, June.
    • Handle: RePEc:spr:patien:v:5:y:2012:i:2:p:79-87
    DOI: 10.2165/11597150-000000000-00000
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    References listed on IDEAS

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    1. Greenhalgh, Joanne & Long, Andrew F & Flynn, Rob, 2005. "The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory?," Social Science & Medicine, Elsevier, vol. 60(4), pages 833-843, February.
    2. Ziebland, Sue & Fitzpatrick, Ray & Jenkinson, Crispin, 1993. "Tacit models of disability underlying health status instruments," Social Science & Medicine, Elsevier, vol. 37(1), pages 69-75, July.
    3. Cashman, S.B. & Adeky, S. & Allen III, A.J. & Corburn, J. & Israel, B.A. & Montaño, J. & Rafelito, A. & Rhodes, S.D. & Swanston, S. & Wallerstein, N. & Eng, E., 2008. "The power and the promise: Working with communities to analyze data, interpret findings, and get to outcomes," American Journal of Public Health, American Public Health Association, vol. 98(8), pages 1407-1417.
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    Cited by:

    1. Renly Lim & Lisa Kalisch Ellett & Elizabeth E. Roughead & Phaik Yeong Cheah & Nashwa Masnoon, 2021. "Patient-Reported Questionnaires to Identify Adverse Drug Reactions: A Systematic Review," IJERPH, MDPI, vol. 18(22), pages 1-17, November.
    2. Tabia Henry Akintobi & Payam Sheikhattari & Emma Shaffer & Christina L. Evans & Kathryn L. Braun & Angela U. Sy & Bibiana Mancera & Adriana Campa & Stephania T. Miller & Daniel Sarpong & Rhonda Hollid, 2021. "Community Engagement Practices at Research Centers in U.S. Minority Institutions: Priority Populations and Innovative Approaches to Advancing Health Disparities Research," IJERPH, MDPI, vol. 18(12), pages 1-14, June.
    3. Oliver Groene, 2012. "Patient and Public Involvement in Developing Patient-Reported Outcome Measures," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(2), pages 75-77, June.

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