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ABSTRACT
Robust stakeholder engagement in health research requires broad communicative integration, not only of patients but also other stakeholders such as health system leaders, clinicians, and researchers. As patients’ personal narratives tend to focus on their own health care experiences, it can be challenging to incorporate these perspectives at the health system level, where discussions often address technical issues such as strategies for aggregating and interpreting population-level data. The PaTH Health System Leaders Demonstration Project provides a case study to explore the potential usefulness of deliberative techniques for facilitating heterogeneous stakeholder engagement in what some sociologists of science call ‘hybid forums.’ Close textual analysis of the event transcript yields insight on how social learning motivates group opinion shifts in deliberative processes. Reconstruction of the event’s narrative arc marks a path of ‘dynamic updating’ that manifests in group opinion change. Analysis of episodes where participants perform ‘deliberative openness’ lends qualitative nuance to previously reported process measure outcomes reflecting high participant satisfaction. Such inquiry helps address a gap in literature on stakeholder engagement in comparative effectiveness health research, sheds light on the understudied genre of ‘empowered deliberation’, and illustrates design principles and practices useful for upstream integration of stakeholder engagement in the research process.
Acknowledgments
The authors thank the participants of the Health System Leaders deliberation event for contributing their time and insights to this project. This work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CDRN-1306-04912) for the development of PCORnet®, the National Patient-Centered Clinical Research Network. The views presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
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No potential conflict of interest was reported by the author(s).
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Notes on contributors
Gordon R. Mitchell
Gordon R. Mitchell is associate professor of communication at the University of Pittsburgh, researching and teaching rhetoric and argumentation. As a deliberative designer, Mitchell has convened over 100 student-led public debates, including one in 1998 on global warming between Dr James Hansen and Dr Patrick Michaels (published in Social Epistemology); and a 2015 debate featuring Dr Arthur Levine, Dr Michael Imperiale and Dr Marc Lipsitch addressing gain-of-function research on potentially pandemic pathogens. Mitchell’s publications in Health, Education & Behavior, The Journal of Medical Humanities, and European Journal for Person Centered Health Care cover topics such as informed group consent in genomic research, rhetoric of the obesity epidemic, phronesis in chronic medical care, and deliberative design in health research stakeholder engagement. His publications have been recognized with national awards from the National Communication Association and American Forensics Association. Author of Strategic Deception (Michigan State University Press). Mitchell has presented research on missile defense at invited talks in venues such as the World Policy Institute; the Belgian Royal Defence College; and the U.S. Congress, while his scholarship on intelligence analysis has been featured in nationally syndicated Op-Eds, policy briefs, and official government reports.
E. Johanna Hartelius
E. Johanna Hartelius is associate professor, Department of Communication Studies, University of Texas at Austin. Researching in the areas of rhetorical theory and criticism, Hartelius focuses on expertise and digital rhetoric, studying the cultural and political implications of experts’ and laypersons’ constructions of knowledge and experience, particularly as these constitute points of entry into traditional and virtual public discourse. Hartelius’ most recent book is The Gifting Logos: Expertise in the Digital Commons (University of California Press, 2020), and her other work has appeared in Argumentation and Advocacy; Critical Studies in Media Communication; Culture, Theory, and Critique; Management Communication Quarterly; Philosophy and Rhetoric; Quarterly Journal of Speech; Review of Communication; Rhetoric Society Quarterly; and Southern Communication Journal.
David McCoy
David McCoy is a doctoral candidate in the Department of Political Science at the University of Pittsburgh. His research focuses on the institutional design of new democratic institutions that aim to improve political deliberation, make representation more accountable, and structure direct participation by the public and civil society. His dissertation research seeks to explain why subnational political elites in Brazil strengthen or weaken federally mandated participatory councils that have discretion over social assistance policy and whether more strongly institutionalized participatory councils in this area improve development outcomes, such as infant mortality. He has worked as a facilitator with several deliberative democracy initiatives in the US, including the Massachusetts Citizen Initiative Review pilot project.
Kathleen M. McTigue
Kathleen M. McTigue is an associate professor of Medicine, Epidemiology and Clinical/Translational Science at the University of Pittsburgh. Her research addresses the epidemiology of obesity and the translation of evidence-based lifestyle interventions into clinical practice, with a particular focus on use of technology to support behavioral interventions. She has led both interventional and observational clinical research studies, with funding from sources such as the National Institutes of Health, the Agency for Health Care Research and Quality and the Patient Centered Outcomes Research Institute. As the lead principal investigator of the PaTH Clinical Research Network, a Partner Network in PCORnet®, the National Patient-Centered Clinical Research Network, Dr McTigue has emphasized the development and evaluation of infrastructure to support stakeholder engagement in health research. Her MyPaTH Story Booth Initiative uses personal narratives to amplify the voices of patients and other stakeholders in health research and to support team-building for stakeholder-engaged research teams. Dr McTigue’s work has been published in venues such as the Journal of the American Medical Association, Annals of Internal Medicine, and the Journal of General Internal Medicine.