title: Deliberative Engagement Methods for Patient-Centered Outcomes Research.
abstract: There is growing emphasis on eliciting and incorporating stakeholder perspectives into health research and public policy development. The deliberative engagement session (DES) method provides one approach to elicit informed preferences from patients and other stakeholders on policy issues. DES involves day-long interaction with participants, including short plenary presentations followed by small group discussion. While interest in DES methods is expanding, practical guidance for researchers on this method remains limited. In this paper, we describe the DES method and its contemporary relevance for health policy research, illustrate how to conduct a DES using an example of a recent patient-centered outcomes research (PCOR) study with which we were involved, and discuss strengths and challenges of using this approach. DES methods generate rich data, reduce the risk of eliciting uniformed preferences or non-attitudes, and increase the likelihood of eliciting informed, reflective preferences. However, they are resource-intensive, and thus generally require trading away a larger, more representative sample. Despite these limitations, the DES method, when carefully designed, is well-suited for engaging stakeholders in research on complex health policy issues.
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 310D, Houston, TX, 77030, USA. stephanie.morain@bcm.edu.
authors.forename: Stephanie R
authors.initials: SR
authors.lastname: Morain
authors.affiliation: Patient Centered Outcomes Research Institute, 1919 M Street, NW, Suite 250, Washington, DC, 20036, USA.
authors.forename: Danielle M
authors.initials: DM
authors.lastname: Whicher
authors.affiliation: Johns Hopkins Berman Institute of Bioethics and Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 1809 Ashland Ave, Baltimore, MD, 21205, USA.
authors.forename: Nancy E
authors.initials: NE
authors.lastname: Kass
authors.affiliation: Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Ave, Baltimore, MD, 21205, USA.
authors.forename: Ruth R
authors.initials: RR
authors.lastname: Faden
mesh_terms: D057186:Comparative Effectiveness Research / Q000379:methods*; D006291:Health Policy; D006801:Humans; D063868:Patient Outcome Assessment; D057240:Patient Preference; D012107:Research Design
keywords: Comparative Effectiveness Research; Engaging Stakeholder; Exit Interview; Policy Issue; Procedural Fairness