Introduction
What is new?
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Increasing emphasis is placed on engaging stakeholders in research.
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Consistent and explicit terminology to describe stakeholders and engagement methods is essential.
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In-person techniques are useful to explain topics and to clarify and develop a deeper understanding of stakeholders’ perspectives.
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Quantitative methods such as voting, survey, and Delphi technique are useful for prioritization.
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We developed a checklist of practices and reporting in stakeholder engagement to promote consistency and advance the field.
Clinicians, patients, policy makers, and other stakeholders regularly face medical decisions in complex areas that have little or no published scientific evidence [1]. To inform this process and ensure a patient-centered research agenda in the United States, national health policy and research organizations have initiated patient-centered outcomes research and comparative effectiveness research to inform and improve health care [2], [3]. Consumer involvement has been shown to positively affect research by increasing its relevance to patients, families, and communities [4]. However, the best methods to engage a wide range of stakeholders in prioritizing research are largely unknown. To support a new future research needs initiative [5] by the Agency for Healthcare Research and Quality (AHRQ), we undertook a project to describe stakeholder engagement methods used by a range of academic institutions, practice-based research networks, nonprofit organizations, and other organizations devoted to health care issues on local and national levels in the United States, Canada, and Europe.
AHRQ created the Evidence-based Practice Centers (EPCs) in 1997 to conduct research reviews for the Effective Health Care Program. Housed at major universities, medical centers, and research institutions in the United States and Canada, the EPCs synthesize existing scientific literature about important health care topics and promote evidence-based practice and decision making. EPCs apply rigorous systematic review methods to produce systematic evidence reviews and comparative effectiveness reviews on medications, devices, and other health care services, with the goal of helping patients, physicians, and policy makers make better decisions about treatments. In addition to synthesizing the evidence, the reviews identify the gaps in evidence that limited the ability to answer the systematic review questions. AHRQ has worked with a formal, broad-based stakeholder group at the agency level, and stakeholder engagement is welcome throughout the phases of the EPC systematic review process (Fig. 1). In 2010, AHRQ expanded its support for EPCs to work with various stakeholders to further develop and prioritize the future research needed by decision makers. To develop guidance for this effort, AHRQ commissioned the Oregon and the Vanderbilt EPCs to conduct a collaborative multidimensional project to outline best practices for engaging stakeholders in defining and prioritizing research needs.