A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research

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.

Figure 1

Preferred reporting items for systematic reviews and meta-analyses (PRISMA) diagram. This diagram presents the number abstracts (n = 2,062) and articles (n = 275) retrieved for screening, the number of articles reporting on research or programs in U.S. settings (n = 95), and the number of articles included in the review (n = 70).

Figure 2

Who are the stakeholders and in what stages of research are they engaged? Panel A presents the frequencies of articles mentioning engagement with each of the seven stakeholder categories in the 7Ps Framework. Because articles might report engagement with multiple stakeholder groups, the denominator for each bar in this histogram equals 70. In Panel B, the share of each bar presenting engagement with a stakeholder group represents the probability of engagement with that group within the stage of research. Because an article could span multiple stages of research, the total reports of engagement in the six research stages equals more than 70 (n = 107).