Journal of general internal medicine
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Editorial
Operationalizing Stakeholder Engagement Through the Stakeholder-Centric Engagement Charter (SCEC).
There is a need for clear strategies and procedures to operationalize stakeholder engagement in research studies. Clear guidelines that promote shared leadership among study investigators and research stakeholders are important for inclusive and sustainable partnerships. ⋯ This perspective article presents the Stakeholder-Centric Engagement Charter (SCEC), one effort to operationalize a stakeholder engagement approach between researchers and an advisory committee as guided by the Patient-Centered Outcomes Research Institute's (PCORI) Research Engagement Principles (i.e., reciprocal relationships, partnerships, co-learning, transparency-honesty-trust). Building on the SCEC can help future investigators develop a study-specific, dynamic, governance document outlining advisory committee and research team preferences in areas such as role expectations, study governance, and decision-making procedures.
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Engaging patients in the research process helps to ensure researchers ask meaningful questions and generate useful evidence to inform healthcare decisions. In 2015, the Veterans Health Administration (VA) Health Services Research & Development (HSR&D) service convened a Veteran engagement workgroup, comprised of researchers, clinicians, and Veterans, to identify ways to integrate Veteran engagement into HSR&D. ⋯ The subgroup recommended the VA adopt the Database of Individual Patient Experiences (DIPEx) methodology for conducting and disseminating health experiences research (HER). In this paper, we describe (1) the key components of the DIPEx approach, (2) how these components complement and broaden current methods of Veteran engagement, (3) an update on VA activities using the DIPEx approach, and (4) a roadmap for future VA HER activities.
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The Veterans Access Research Consortium (VARC), a Department of Veterans Affairs (VA) Consortium of Research focused on access to healthcare, has been funded by VA's Health Services Research and Development Service (HSR&D) to develop a research roadmap for healthcare access. The goal of the roadmap is to identify operationally aligned research questions that are most likely to lead to meaningful improvements in Veterans' healthcare access. ⋯ Engaging multiple methods to solicit stakeholder perspectives enables more nuanced understanding of access-related priorities for VA. Future research should consider utilizing such an approach to identify additional research and/or operational priorities.
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Selective or non-reporting of study outcomes results in outcome reporting bias. ⋯ There was evidence of selective outcome reporting. Statistically significant outcomes were more likely to be published than non-significant ones. Our simple approach provided a quick estimate of the impact of unreported outcomes on the estimated effect. This approach could be used as a quick assessment of the potential impact of unreported outcomes.