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Journal of General Internal Medicine

, Volume 29, Issue 12, pp 1692–1701 | Cite as

A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research

  • Thomas W. Concannon
  • Melissa Fuster
  • Tully Saunders
  • Kamal Patel
  • John B. Wong
  • Laurel K. Leslie
  • Joseph Lau
Review

ABSTRACT

OBJECTIVES

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.

METHODS AND RESULTS

We worked with stakeholders before, during and after the review was conducted to: define the primary and key research questions; conduct the literature search; screen titles, abstracts and articles; abstract data from the articles; and analyze the data. The literature search yielded 2,062 abstracts. The review was conducted on 70 articles that reported on stakeholder engagement in individual research projects or programs.

FINDINGS

Reports of stakeholder engagement are highly variable in content and quality. We found frequent engagement with patients, modestly frequent engagement with clinicians, and infrequent engagement with stakeholders in other key decision-making groups across the healthcare system. Stakeholder engagement was more common in earlier (prioritization) than in later (implementation and dissemination) stages of research. The roles and activities of stakeholders were highly variable across research and program reports.

RECOMMENDATIONS

To improve on the quality and content of reporting, we developed a 7-Item Stakeholder Engagement Reporting Questionnaire. We recommend three directions for future research: 1) descriptive research on stakeholder-engagement in research; 2) evaluative research on the impact of stakeholder engagement on the relevance, transparency and adoption of research; and 3) development and validation of tools that can be used to support stakeholder engagement in future work.

KEY WORDS

stakeholders research review 

Notes

Acknowledgements

Contributors

Ushahsi Basu, Ridita Nizam, and Madeleine Streit screened abstracts, retrieved and reviewed full text articles, and recorded data on the articles that were included in the review. Samuel Hirshman and Shawna Beck-Sullivan assisted in preparation of the manuscript.

The authors also wish to thank Grant P. Thompson and Gerald Rasmussen of the Consumer Reports Panel, Judith Bradford of Fenway Institute & Fenway Health, Lawrence Becker of Xerox, JoAnne Grunbaum of the Centers for Disease Control & Prevention, Eleanor Perfetto of Pfizer Inc., Julie Lynch of the University of Massachusetts-Boston, and Radley (Chris) Sheldrick of Tufts Medical Center, who participated as stakeholders on this research project. Further information on these individuals and their roles on the project is presented in the Methods section and in Table 1.

Funders

The authors were support by grants from the Agency for Healthcare Research and Quality (AHRQ) (K01 HS017726 and HHSA 290 2007 10055 I) and the National Center for Advancing Translational Science (NCATS), NIH (UL1 RR025752).

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Agency for Healthcare Research and Quality or the National Institutes of Health.

Prior Presentations

The data presented in this article have not been presented at any conference or in any other peer reviewed publication.

Conflict of Interest

The authors have no competing interests that bear on the content of this manuscript.

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 during the research design and analysis stages.

Supplementary material

11606_2014_2878_MOESM1_ESM.pdf (61 kb)
Online Appendix A (PDF 61 kb)
11606_2014_2878_MOESM2_ESM.pdf (119 kb)
Online Appendix B (PDF 118 kb)

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Copyright information

© Society of General Internal Medicine 2014

Authors and Affiliations

  • Thomas W. Concannon
    • 1
    • 2
    • 3
  • Melissa Fuster
    • 4
  • Tully Saunders
    • 5
  • Kamal Patel
    • 5
  • John B. Wong
    • 2
    • 3
    • 5
  • Laurel K. Leslie
    • 2
    • 3
    • 5
  • Joseph Lau
    • 6
  1. 1.The RAND CorporationBostonUSA
  2. 2.Tufts University School of MedicineBostonUSA
  3. 3.Tufts Clinical and Translational Science InstituteBostonUSA
  4. 4.Tufts University Friedman School of Nutrition Science and Policy, and Tufts Medical CenterBostonUSA
  5. 5.Institute for Clinical Research and Health Policy Studies, Tufts Medical CenterBostonUSA
  6. 6.Brown University School of Public HealthProvidenceUSA

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