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. 2018 Jan;27(1):17-31.
doi: 10.1007/s11136-017-1581-x. Epub 2017 May 12.

Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

Laura Forsythe  1 , Andrea Heckert  1 , Mary Kay Margolis  1 , Suzanne Schrandt  2 , Lori Frank  3
Affiliations

Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

Laura Forsythe et al. Qual Life Res. 2018 Jan.

Abstract

Purpose: Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI's evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners.

Methods: Detailed quantitative and qualitative information collected annually from investigators and their partners was analyzed via descriptive statistics and cross-sectional qualitative content and thematic analysis, and compared against the outcomes expected from the evaluation framework and its underlying conceptual model.

Results: The data support the role of engaged research partners in refinements to the research questions, selection of interventions to compare, choice of study outcomes and how they are measured, contributions to strategies for recruitment, and ensuring studies are patient-centered.

Conclusions: The evaluation framework and the underlying conceptual model are supported by results to date. PCORI will continue to assess the effects of engagement as the funded projects progress toward completion, dissemination, and uptake into clinical decision making.

Keywords: CER; PCORI; Patient engagement; Patient-centered outcomes research.

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Figures

Fig. 1
Fig. 1
a PCORI evaluation framework for engagement in research. Note: to view the full evaluation framework regarding all of PCORI’s work, see http://www.pcori.org/research-results/evaluating-our-work/planning-our-evaluation-reporting-results. b Conceptual model of patient-centered outcomes research. Reproduced with permission from Frank et al. [16]
Fig. 2
Fig. 2
Investigator report sample
Fig. 3
Fig. 3
Ratings of partner influence across study phases (investigator-reported)
See this image and copyright information in PMC

References

    1. Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, Schwartz C, Revicki DA, Moinpour CM, McLeod LD, Lyons JC, Lenderking WR, Hinds PS, Hays RD, Greenhalgh J, Gershon R, Feeny D, Fayers PM, Cella D, Brundage M, Ahmed S, Aaronson NK, Butt Z. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research. 2013;22(8):1889–1905. doi: 10.1007/s11136-012-0344-y. - DOI - PubMed
    1. Kirwan JR, Hewlett S. Patient perspective: Reasons and methods for measuring fatigue in rheumatoid arthritis. Journal of Rheumatology. 2007;34(5):1171–1173. - PubMed
    1. Food and Drug Administration (FDA) Guidance for industry on patient-reported outcome measures: Use in medical product development to support labeling claims, federal register. Washington, DC: U.S. Department of Health and Human Services; 2009. pp. 65132–65133.
    1. Charlton JI. Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press; 1998.
    1. Viswanathan, M., Ammerman, A., Eng, E., Garlehner, G., Lohr, K. N., Griffith, D., Rhodes, S., Samuel-Hodge, C., Maty, S., Lux, L., Webb, L., Sutton, S. F., Swinson, T., Jackman, A., & Whitener, L. (2004). Community-based participatory research: Assessing the evidence. Evidence Report Technology Assessment (Summ)(99), 1–8. - PMC - PubMed

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