A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research
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Despite widespread agreement that stakeholder engagement is needed in patient-centered outcomes research (PCOR), no taxonomy exists to guide researchers and policy makers on how to address this need. We followed an iterative process, including several stages of stakeholder review, to address three questions: (1) Who are the stakeholders in PCOR? (2) What roles and responsibilities can stakeholders have in PCOR? (3) How can researchers start engaging stakeholders? We introduce a flexible taxonomy called the 7Ps of Stakeholder Engagement and Six Stages of Research for identifying stakeholders and developing engagement strategies across the full spectrum of research activities. The path toward engagement will not be uniform across every research program, but this taxonomy offers a common starting point and a flexible approach.
KEY WORDSstakeholders research guidance
The authors wish to thank Harry P. Selker, MD, MSPH, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center and Tufts University School of Medicine, Donna Jo McCloskey, PhD, National Center or Research Resources, National Institutes for Health, and Sean Cahill, PhD, The Fenway Institute, for reviewing early versions of the manuscript.
The authors wish to acknowledge Joseph Lau, MD, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center and Tufts University School of Medicine, for creating an earlier version of the six-stage model of CER.
The authors wish to acknowledge Tully Saunders, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, for help in preparing the manuscript.
Conflict of Interest
The authors declare that they do not have a conflict of interest.
This project was funded in whole or in part with federal funds from the National Center for Research Resources (NCRR), National Institutes of Health (NIH), through the Clinical and Translational Science Awards Program (CTSA), part of the Roadmap Initiative, Re-Engineering the Clinical Research Enterprise. This publication was supported by grant no. UL1 RR025752 from the National Center for Research Resources (NCRR), National Institutes of Health (NIH). Dr. Concannon was supported by grant no. K01 HS017726 from the Agency for Healthcare Research and Quality. Dr. Morrato’s effort was supported by grant no. K12HS019464 from the Agency for Healthcare Research and Quality.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Center for Research Resources, National Institutes of Health, the Centers for Medicare & Medicaid Services, the Agency for Healthcare Research and Quality, or the Centers for Disease Control & Prevention.
Dr. Concannon took primary responsibility for conceiving and writing the manuscript, obtaining contributions from co-authors, and managing stakeholder reviews and government clearances. All co-authors made intellectual contributions and contributed original writing to the manuscript. Dr. Leslie contributed substantial editorial review.
- 10.Institute of Medicine. Initial Priorities for Comparative Effectiveness Research. Washington: National Academies Press; 2009.Google Scholar
- 11.Federal Coordinating Council for Comparative Effectiveness Research. Report to the President and Congress. Washington: US Department of Health and Human Services; 2009. http://www.hhs.gov/recovery/programs/cer/cerannualrpt.pdf. Accessed June 18, 2011.
- 12.Patient Centered Outcomes Research Institute. Available at: http://www.pcori.org. Accessed June 18, 2011.
- 13.McClellan M, Benner J, Garber AM, Meltzer DO, Tunis SR, Pearson S. Comparative Effectiveness Research: Will It Bend the Health Care Cost Curve and Improve Quality? Washington: The Brookings Institute; 2009.Google Scholar
- 16.Institute of Medicine. Conflict of Interest in Medical Research, Education, and Practice. Washington: National Academies Press; 2009.Google Scholar
- 17.Harvard Business School Press. The Essentials of Negotiation. Boston: Harvard Business School Publishing; 2005.Google Scholar
- 18.Malhotra D, Bazerman MH. Negotiation Genius. New York: Bantam Books; 2008.Google Scholar
- 19.Institute of Medicine. Clinical Practice Guidelines We Can Trust. Washington: The National Academies Press; 2011.Google Scholar
- 21.Minkler ME, Wallerstein NE. Community Based Participatory Research for Health. San Francisco: Jossey-Bass; 2003.Google Scholar
- 22.CTSA Community Engagement Key Function Committee. Principles of Community Engagement. 2nd ed. Washington: U.S. Department of Health and Human Services; 2011.Google Scholar
- 24.O’Haire C, McPheeters M, Nakamoto EK, et al. Methods for Engaging Stakeholders To Identify and Prioritize Future Research Needs. Rockville: Agency for Healthcare Research and Quality; 2011. AHRQ Publication No. 11-EHC044-EF.Google Scholar
- 26.Medicare prescription drug, improvement, and modernization act of 2003, H.R.1, 108th Congress.Google Scholar
- 27.Patient-Centered Outcomes Research Institute. Draft National priorities for research and research agenda, version 1. Washington; 2012.Google Scholar
- 33.Institute of Medicine. Finding What Works in Health Care: standards for Systematic Reviews. Washington: National Academies Press; 2011.Google Scholar
- 34.Higgins JPT, Green S. Cochrane handbook for systematic reviews of interventions version 5.1.0. The Cochrane Collaboration; 2008.Google Scholar
- 38.Agency for Healthcare Research and Quality. About the Eisenberg Center. Available at: http://www.effectivehealthcare.ahrq.gov/index.cfm/who-is-involved-in-the-effective-health-care-program1/about-the-eisenberg-center. Accessed June 18, 2011.
- 42.Veterans Administration. Quality Enhancement Research Initiative (QUERI). Available at: http://www.queri.research.va.gov/about/default.cfm. Accessed June 18, 2011.