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Deliberative Engagement Methods for Patient-Centered Outcomes Research

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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.

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Acknowledgements

Dr. Morain gratefully acknowledges generous financial and intellectual support from the Hecht-Levi fellowship program at the Berman Institute of Bioethics. The authors thank Kristina Hallez, Rachel Fabi, and the staff at Geisinger Health System and the Center for Medical Technology Policy for support in the conduct and analysis of the DES study described in this manuscript.

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Authors and Affiliations

  1. Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 310D, Houston, TX, 77030, USA

    Stephanie R. Morain

  2. Patient Centered Outcomes Research Institute, 1919 M Street, NW, Suite 250, Washington, DC, 20036, USA

    Danielle M. Whicher

  3. 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

    Nancy E. Kass

  4. Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Ave, Baltimore, MD, 21205, USA

    Ruth R. Faden

Authors
  1. Stephanie R. Morain
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  2. Danielle M. Whicher
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  3. Nancy E. Kass
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  4. Ruth R. Faden
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Contributions

All authors contributed to the concept and design of this manuscript. Stephanie Morain drafted the manuscript, and acts as the overall guarantor for this work. Danielle Whicher, Nancy Kass, and Ruth Faden designed the example DES described in this manuscript, and reviewed and provided substantial feedback on earlier drafts. All authors reviewed and approved the final draft of this manuscript.

Corresponding author

Correspondence to Stephanie R. Morain.

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Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Funding

This research was supported by Contract Number IP2PI000487-01 from the Patient-Centered Outcomes Research Institute (PCORI). All statements in this article, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee.

Conflict of interest

Stephanie Morain, Nancy Kass, and Ruth Faden have no conflicts relevant to the contents of this article. Danielle Whicher is an employee of PCORI. Dr. Whicher’s work on the DES study described in this manuscript was completed before her employment with PCORI.

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Morain, S.R., Whicher, D.M., Kass, N.E. et al. Deliberative Engagement Methods for Patient-Centered Outcomes Research. Patient 10, 545–552 (2017). https://doi.org/10.1007/s40271-017-0238-8

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  • DOI: https://doi.org/10.1007/s40271-017-0238-8

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