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. 2015 May;24(5):1033-41.
doi: 10.1007/s11136-014-0893-3. Epub 2015 Jan 6.

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Lori Frank  1 , Laura Forsythe, Lauren Ellis, Suzanne Schrandt, Sue Sheridan, Jason Gerson, Kristen Konopka, Sarah Daugherty
Affiliations

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Lori Frank et al. Qual Life Res. 2015 May.

Abstract

Purpose: To provide an overview of PCORI's approach to engagement in research.

Methods: The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research.

Results: To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet.

Conclusion: PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

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Figures

Fig 1
Fig 1
Conceptual model of patient-centered outcomes research
See this image and copyright information in PMC

References

    1. Viswanathan, M., Ammerman, A., Eng, E., Garlehner, G., Lohr, K. N., Griffith, D., … Whitener L. (2004). Community-based participatory research: Assessing the evidence. Evidence report/technology assessment (Summary), No. 99. Prepared by RTI–University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication 04-E022-2. Rockville, MD: Agency for Healthcare Research and Quality. - PMC - PubMed
    1. Cashman, S. B., Adeky, S., Allen, A. J., Corburn, J., Israel, B. A., Montaño, J., … Eng, E. (2008). The power and the promise: Working with communities to analyze data, interpret findings, and get to outcomes. American Journal of Public Health,98(8), 1407–1417. - PMC - PubMed
    1. Whitlock EP, Lopez SA, Chang S, Helfand M, Eder M, Floyd N. AHRQ series paper 3: Identifying, selecting, and refining topics for comparative effectiveness systematic reviews: AHRQ and the effective health-care program. Journal of Clinical Epidemiology. 2010;63(5):491–501. doi: 10.1016/j.jclinepi.2009.03.008. - DOI - PubMed
    1. National Institutes of Health. (2004). From public advocacy to research priorities: NHLBI listens and responds. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov.ezproxy.welch.jhmi.edu/public/nhlbi-listens.pdf. Accessed April 23, 2014.
    1. Staley, K. (2009). Exploring impact: Public involvement in NHS, public health and social care research. INVOLVE.

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