Patient and Public Involvement in Patient-Reported Outcome Measures
- 965 Downloads
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.
KeywordsPublic Involvement Prom Development Minimal Important Change COSMIN Checklist Collaborative Form
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.
- 8.Liang MH. Pushing the limits of patient-oriented outcome measurements in the search for disease modifying treatments for osteoarthritis. J Rheumatol 2004; 70: 61–5Google Scholar
- 15.Department of Health. Guidance on the routine collection of patient reported outcome measures (PROMs) for the NHS in England 2009/10. London: Department of Health, 2008Google Scholar
- 16.Staley K. Exploring impact: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE, 2009Google Scholar
- 17.Brett J, Staniszewska S, Mockford C, et al. The PIRICOM study: a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. London: UK Clinical Research Collaboration, 2009Google Scholar
- 23.Barnard A, Carter M, Britten N, et al. The PC11 report: an evaluation of consumer involvement in the London Primary Care Studies Programme. Exeter: Peninsula Medical School, 2005Google Scholar
- 30.Staniszewska S, Mockford C, Gibson A, et al. Moving forward: understanding the negative experiences and impacts of patient and public involvement in health service planning, development and evaluation. In: Barnes M, Cotterell P, editors. Critical perspectives on user involvement. Bristol: Policy Press, 2011Google Scholar
- 33.Hanley B, Bradburn J, Gorin S, et al. Involving consumers in research and development in the NHS: briefing notes for researchers. Winchester: Consumers in NHS Research Support Unit, 2000Google Scholar
- 36.Food and Drug Administration. Guidance for industry — patient-reported outcome measures: use in medical product development to support labeling claims. Rockville (MD): US Department of Health and Human Services, 2009 [online]. Available from URL: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf [Accessed 2011 Apr 4]Google Scholar
- 38.Smith S, Cano S, Lamping D, et al. Patient-reported outcome measures (PROMs) for routine use in treatment centres: recommendations based on a review of the scientific evidence (final report to the Department of Health). 2005 Dec [online]. Available from URL: http://www.wmqi.westmidlands.nhs.uk/downloads/file/PROMS%20Final%20report%20Dec%2005.pdf [Accessed 2011 Apr 4]
- 39.Streiner DL, Norman GR. Health measurement scales: a practical guide to their development and use. 4th ed. Oxford: Oxford Medical Publications, 2008Google Scholar
- 41.McDowell I. Measuring health: a guide to rating scales and questionnaires. 3rd ed. New York (NY): Oxford University Press, 2006Google Scholar
- 45.The James Lind Alliance [online]. Available from URL: http://www.lindalliance.org [Accessed 2012 Apr 1]