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. 2020 Jan 13;4(1):4.
doi: 10.1186/s41687-019-0172-8.

An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs)

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An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs)

J Carlton et al. J Patient Rep Outcomes. .

Abstract

Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients' subjective assessments of their symptoms and functional status and also their quality of life. Whilst the importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted this practice is not widespread. There is a lack of guidance on how public involvement (PI) could be embedded in the development of PROMs, where the roles can be more complex than in other types of research. This paper provides a timely review and sets out an emerging framework for fully incorporating PI into PROM development.

Keywords: Patient and Public Involvement (PPI); Patient reported outcome measures (PROMs); Public involvement (PI); Questionnaire.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Public involvement in different stages of PROM development

References

    1. Stover AM, Basch EM. Using patient-reported outcome measures as quality indicators in routine cancer care. Cancer. 2016;122(3):355–357. doi: 10.1002/cncr.29768. - DOI - PMC - PubMed
    1. Field J, Holmes MM, Newell D. PROMs data: Can it be used to make decisions for individual patients? A narrative review. Patient Relat Outcome Meas. 2019;10:233–241. doi: 10.2147/PROM.S156291. - DOI - PMC - PubMed
    1. Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K. PRO development: Rigorous qualitative research as the crucial foundation. Quality of Life Research. 2010;19(8):1087–1096. doi: 10.1007/s11136-010-9677-6. - DOI - PMC - PubMed
    1. Food and Drug Administration (2009) Guidance for Industry: patient-reported outcome measures: use in medical product development to support labelling claims. U. S Department of Health and Human Sciences, Food and Drug Administration. Available from: https://www.fda.gov/media/77832/download. Accessed 27 Nov 2018.
    1. INVOLVE (2012) Briefing notes for researchers: Involving the public in NHS, public health and social care research; Eastleigh. ISBN 978-0-9557053-7-3.