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A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research

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Abstract

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.

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Acknowledgements

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.

Financial Disclosures

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.

Other Disclosures

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.

Author Contributions

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.

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Authors and Affiliations

  1. Institute for Clinical Research and Health Policy Studies, Tufts Medical Center and Tufts University School of Medicine, Boston, MA, USA

    Thomas W. Concannon PhD, Denise Daudelin RN, MPH & Laurel K. Leslie MD, MPH

  2. Office of the Medical Director for Research, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA

    Paul Meissner MSPH

  3. Prevention Research Centers Program, Centers for Disease Control and Prevention, Atlanta, GA, USA

    Jo Anne Grunbaum EdD

  4. U.S. Outcomes Research, Merck & Co., North Wales, PA, USA

    Newell McElwee Pharm.D, MSPH

  5. Oregon Health & Sciences University, Portland, OR, USA

    Jeanne-Marie Guise MD, MPH

  6. Health Ratings Center, Consumer Reports, Yonkers, NY, USA

    John Santa MD, MPH

  7. Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Patrick H. Conway MD, MSc.

  8. Centers for Medicare & Medicaid Services, Baltimore, MD, USA

    Patrick H. Conway MD, MSc.

  9. Colorado Health Outcomes Program, School of Medicine, and Department of Health Systems, Management, and Policy, Colorado School of Public Health, University of Colorado, Aurora, CO, USA

    Elaine H. Morrato DrPH, MPH

Authors
  1. Thomas W. Concannon PhD
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  2. Paul Meissner MSPH
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  3. Jo Anne Grunbaum EdD
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  4. Newell McElwee Pharm.D, MSPH
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  5. Jeanne-Marie Guise MD, MPH
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  6. John Santa MD, MPH
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  7. Patrick H. Conway MD, MSc.
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  8. Denise Daudelin RN, MPH
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  9. Elaine H. Morrato DrPH, MPH
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  10. Laurel K. Leslie MD, MPH
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Corresponding author

Correspondence to Thomas W. Concannon PhD.

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Concannon, T.W., Meissner, P., Grunbaum, J.A. et al. A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research. J GEN INTERN MED 27, 985–991 (2012). https://doi.org/10.1007/s11606-012-2037-1

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  • DOI: https://doi.org/10.1007/s11606-012-2037-1

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