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

Published In: Journal of General Internal Medicine, v. 29, no. 12, Dec. 2014, p. 1692-1701

Posted on RAND.org on January 01, 2014

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

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Research Questions

  1. What do researchers report about the frequency and nature of stakeholder engagement in comparative effectiveness research and patient-centered outcomes research?
  2. Who are the stakeholders and in what stages of research are they engaged?
  3. In what ways do researchers engage stakeholders?

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 Findings

A review of 70 peer-reviewed articles shows a large degree of variation in the amount and type of stakeholder engagement in comparative effectiveness research and patient-centered research.

  • Among stakeholders, patients were the most likely to be engaged by researchers; health care providers were the second most likely.
  • Engagement was infrequent or rare with policy makers, payers, product makers, and purchasers.
  • Stakeholder engagement was most likely to occur in the early stages of research, often to help define research questions or other key aspects of the project.
  • Stakeholders were more often engaged as consultants or advisors than as staff or co-investigators.
  • The most common barrier to engaging stakeholders was a lack of time on the part of researchers.

Recommendations

Hands-on training opportunities and user-friendly tools and methods for stakeholder recruitment, engagement, and evaluation are needed to help investigators embrace stakeholder engagement in their research projects.

RAND's 7-Item Stakeholder Engagement Reporting Questionnaire will help researchers report more accurately and thoroughly on stakeholder engagement.

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