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

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          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.

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          Patient involvement in clinical research: why, when, and how

          José Sacristán, Alfonso Aguarón, Cristina Avendaño-Solá … (2016)
          The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to promote the gradual emergence of the expert patient.
          Article 0 comments Cited 131 times – based on 0 reviews     Review now
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            Patient involvement in the development of patient‐reported outcome measures: a scoping review

            Bianca M Wiering, Dolf de Boer, Diana M.J. Delnoij (2016)
            Abstract Background Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria Studies were included if they described a new PROM development. Data extraction Basic information and information regarding patient involvement in development phases was recorded. Main results A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions Although patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
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              Patient and public involvement in patient-reported outcome measures: evolution not revolution.

              Sophie Staniszewska, Kirstie L Haywood, Jo Brett … (2012)
              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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                Author and article information

                Contributors
                J. Carlton:
                ORCID: http://orcid.org/0000-0002-9373-7663
                j.carlton@sheffield.ac.uk
                Journal
                Journal ID (nlm-ta): J Patient Rep Outcomes
                Journal ID (iso-abbrev): J Patient Rep Outcomes
                Title: Journal of Patient-Reported Outcomes
                Publisher: Springer International Publishing (Cham )
                ISSN (Electronic): 2509-8020
                Publication date (Electronic): 13 January 2020
                Publication date PMC-release: 13 January 2020
                Publication date Collection: December 2020
                Volume: 4
                Electronic Location Identifier: 4
                Affiliations
                [1 ]ISNI 0000 0004 1936 9262, GRID grid.11835.3e, University of Sheffield, ; Regent Court, 30 Regent Street, Sheffield, S1 4DA UK
                [2 ]ISNI 0000000121885934, GRID grid.5335.0, University of Cambridge, ; Cambridge, UK
                [3 ]ISNI 0000 0004 1936 8948, GRID grid.4991.5, University of Oxford, ; Oxford, UK
                [4 ]ISNI 0000 0001 2322 6764, GRID grid.13097.3c, Kings College London, ; London, UK
                Author information
                http://orcid.org/0000-0002-9373-7663
                Article
                Publisher ID: 172
                DOI: 10.1186/s41687-019-0172-8
                PMC ID: 6957651
                PubMed ID: 31933005
                SO-VID: a8cd6b1a-f931-41de-b48e-5bba87356eb8
                Copyright © © The Author(s) 2020
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                Date received : 24 June 2019
                Date accepted : 23 December 2019
                Categories
                Subject: Commentary
                Custom metadata
                issue-copyright-statement © The Author(s) 2020

                Keywords: public involvement (pi),patient and public involvement (ppi),patient reported outcome measures (proms),questionnaire
                Data availability:
                Keywords: public involvement (pi), patient and public involvement (ppi), patient reported outcome measures (proms), questionnaire

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