Researchers are increasingly realizing that partnering with patients and stakeholders to design and conduct studies can make those studies and the results they produce more useful to those making important health and healthcare decisions.
PCORI and the Veterans Administration Health Services Research and Development Service (VA HSR&D) are among those at the forefront of this movement. They and others embrace the concept as a way to make the questions that the studies they fund seek to answer more relevant to those making healthcare decisions for themselves and their families.
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This makes it more likely the results will be trustworthy and used in day-to-day practice, helping improve patient care and outcomes. Relevance and trust are long-standing concerns in health research, but the COVID pandemic has made clear just how critical these issues are.
To provide an overview of what’s known about this approach to research, PCORI and VA HSR&D jointly funded a special March supplement to the Journal of General Internal Medicine (JGIM) called Patient and Veteran Engagement in Health Research. JGIM is the widely read and cited official journal of the Society for General Internal Medicine.
The supplement includes some two dozen research papers, commentaries, and editorials, as well as a series of first-person patient- and patient/researcher-authored narratives—a rarity in any major scientific journal. Some of the narratives are first-person accounts from patients and veterans describing their experiences partnering with researchers while others were collaborative efforts by patients, veterans, and researchers describing shared experiences and lessons learned about how to work together most effectively.
The papers in the supplement make several things clear about engagement in research. First, they indicate that this approach can help ensure that studies address questions important to patients and stakeholders. But perhaps more important, they suggest engagement is feasible at all stages of the research process; that participants and researchers both see and value the benefits of this; and that engagement helps to improve the studies’ feasibility, relevance, and quality.
One paper in the supplement, by Maureen Maurer, MPH, of the American Institutes for Research and colleagues, deepens our understanding of the benefits of patient and stakeholder engagement in research and the influence research partnerships can have on key aspects of studies, including their feasibility and acceptability. And it notes that based on a PubMed review, patient engagement literature citations grew more than 900 percent from 2000 to 2020. This stems in part from PCORI’s establishment and its commitment to engagement as a fundamental element to all of its work.
In line with these efforts, VA HSR&D in 2015 established a national work group to outline an approach to local veteran engagement initiatives and to develop goals for promoting veteran research engagement nationally. That work, described in an article by Sara J. Knight, PhD, of the VA Salt Lake City Healthcare System, led to the development of a unique model for engaging veterans in research in a way that addresses their unique concerns and challenges.
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Several of the narratives are accounts from patients and veterans describing their experiences partnering with researchers, including one by a veteran with a spinal cord injury and another by a patient with chronic lung disease. Others are collaborative efforts by patients, veterans, and researchers describing shared experiences and lessons learned about how to work together most effectively.
Together, the articles in the supplement provide a rich overview of how partnering with patients and veterans in health research has evolved over the past decade in terms of both the practice of engagement—what researchers, patients, and stakeholder partners are doing—and the science of engagement—what we know about the differences engagement is making. The perspectives and research articles share a focus on the lived experience of the participants of engagement, as well as exploring barriers to and facilitators of how well groups not used to partnering can work together.
Although more study is needed, the articles make clear that there is a growing body of evidence that engaging patients in health research can influence the way studies are designed, conducted, and analyzed and their results disseminated to more effectively address patients’ needs.
All articles in the supplement are available free of charge on the JGIM website.
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The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.
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