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Deliberative Engagement Methods for Patient-Centered Outcomes Research

Author

Listed:
  • Stephanie R. Morain

    (Baylor College of Medicine)

  • Danielle M. Whicher

    (Patient Centered Outcomes Research Institute)

  • Nancy E. Kass

    (Johns Hopkins Bloomberg School of Public Health)

  • Ruth R. Faden

    (Johns Hopkins Berman Institute of Bioethics)

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.

Suggested Citation

  • Stephanie R. Morain & Danielle M. Whicher & Nancy E. Kass & Ruth R. Faden, 2017. "Deliberative Engagement Methods for Patient-Centered Outcomes Research," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(5), pages 545-552, October.
    • Handle: RePEc:spr:patien:v:10:y:2017:i:5:d:10.1007_s40271-017-0238-8
    DOI: 10.1007/s40271-017-0238-8
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    References listed on IDEAS

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    1. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
    2. Damschroder, Laura J. & Pritts, Joy L. & Neblo, Michael A. & Kalarickal, Rosemarie J. & Creswell, John W. & Hayward, Rodney A., 2007. "Patients, privacy and trust: Patients' willingness to allow researchers to access their medical records," Social Science & Medicine, Elsevier, vol. 64(1), pages 223-235, January.
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    Cited by:

    1. Sean Grant & Glen S. Hazlewood & Holly L. Peay & Ann Lucas & Ian Coulter & Arlene Fink & Dmitry Khodyakov, 2018. "Practical Considerations for Using Online Methods to Engage Patients in Guideline Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(2), pages 155-166, April.

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