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      Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned

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          Abstract

          BACKGROUND

          Patients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact.

          OBJECTIVE

          We aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned.

          DESIGN

          A self-report instrument was completed by researchers between 6 and 12 months following project initiation.

          PARTICIPANTS

          Forty-seven principal investigators or their designees (94 % response rate) participated in the study.

          MAIN MEASURES

          Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured.

          KEY RESULTS

          Most (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as “critically important” facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders’ practical needs.

          CONCLUSIONS

          PCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base.

          Electronic supplementary material

          The online version of this article (doi:10.1007/s11606-015-3450-z) contains supplementary material, which is available to authorized users.

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          Most cited references28

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          Evaluating patient and stakeholder engagement in research: moving from theory to practice.

          Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value - or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes.
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            A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.

            We conducted a review of the peer-reviewed literature since 2003 to catalogue reported methods of stakeholder engagement in comparative effectiveness research and patient-centered outcomes research.
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              The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.

              The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.
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                Author and article information

                Contributors
                202-827-7717 , lforsythe@pcori.org
                Journal
                J Gen Intern Med
                J Gen Intern Med
                Journal of General Internal Medicine
                Springer US (New York )
                0884-8734
                1525-1497
                10 July 2015
                10 July 2015
                January 2016
                : 31
                : 1
                : 13-21
                Affiliations
                [ ]Patient-Centered Outcomes Research Institute (PCORI), 1919 M St NW, suite 250, Washington, DC 20036 USA
                [ ]AcademyHealth, Washington, DC USA
                Article
                3450
                10.1007/s11606-015-3450-z
                4700002
                26160480
                a54c976e-c6bf-4576-b59a-53f845f06def
                © The Author(s) 2015

                Open Access This 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
                : 23 January 2015
                : 28 April 2015
                : 5 June 2015
                Categories
                Original Research
                Custom metadata
                © Society of General Internal Medicine 2016

                Internal medicine
                patient-centered outcomes research,comparative effectiveness research (cer),patient engagement

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