Journal of general internal medicine
-
Stakeholder advisory boards are recognized as an essential and useful part of patient-centered research. However, such engagement can involve exchanges of diverse individual experiences, multiple opinions, and strong feelings in the face of researchers' limitations, deadlines, and agendas. Yet, little work examines how these potential tensions occur and are resolved in actual advisory board meetings. ⋯ Our analysis focused on two short excerpts from the first PAC meeting to demonstrate members' navigation of advice-giving and advice-receiving-one in which advice was ultimately implemented by the study team and another in which it was deemed unfeasible. Although advice is inherent to the work of all PACs, it often emerges unannounced as negotiated moments, made up of seemingly minor conversation moves. As a recurring event, advice can and should be analyzed and discussed within PACs to improve communication and team dynamics.
-
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.
-
With 20 million living veterans and millions more immediate family members, and approximately 9 million veterans enrolled in the nationally networked VA healthcare system, representing the interests and needs of veterans in this complex community is a substantial endeavor. Based on the importance of engaging Veterans in research, the VA Health Services Research and Development (HSR&D) Service convened a Working Group of VA researchers and Veterans to conduct a review of patient engagement models and develop recommendations for an approach to engage Veterans in health research that would incorporate their unique lived experiences and interests, and their perspectives on research priorities. ⋯ The resulting model identifies the range of potential stakeholders and three domains of relevant constructs-processes expected to facilitate Veteran engagement in research with other stakeholders, individual stakeholder and external factors, and outcomes. The expectation is that Veteran engagement will benefit research to policy and practice translation, including increasing the transparency of research and producing knowledge that is readily accepted and implemented in healthcare.
-
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.
-
Patients with chronic pain experience stigma within the healthcare system. This stigma is compounded for those taking long-term prescription opioids. Often, public messaging and organizational policies have telegraphed that opioid treatment is a problem to be solved by focusing only on medication reduction efforts. ⋯ Targeting the needs of any stakeholder group in isolation is suboptimal. Accordingly, we detail the EMPOWER patient-centered opioid tapering clinical research framework and specific strategies to address stakeholder concerns. We also discuss how this framework may be applied to enhance engagement in healthcare research broadly.