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Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development

Author

Listed:
  • Dmitry Khodyakov

    (RAND Health Care, RAND Corporation)

  • Sean Grant

    (RAND Health Care, RAND Corporation
    Indiana University, Richard M. Fairbanks School of Public Health)

  • Brian Denger

    (Parent Project Muscular Dystrophy)

  • Kathi Kinnett

    (Parent Project Muscular Dystrophy)

  • Ann Martin

    (Parent Project Muscular Dystrophy)

  • Holly Peay

    (RTI International)

  • Ian Coulter

    (RAND Health Care, RAND Corporation)

Abstract

Patients and caregivers are increasingly recognized as key stakeholders in developing clinical practice guidelines (CPGs). Online engagement approaches offer the promise of a rigorous, scalable, and convenient engagement method. This paper illustrates how an online modified-Delphi approach could be used to engage patients, caregivers, and other stakeholder in CPG development. It provides practical guidance for conducting online modified-Delphi panels that covers (1) joint development of the engagement approach with relevant stakeholders, (2) adaptation of methods used by experts in guideline development, (3) pilot testing, (4) participant recruitment, (5) determining panel size and composition, (6) building participant capacity, (7) facilitation of two-way interaction, (8) continuous engagement and retention of participants, (9) rigorous data analysis, (10) evaluation of engagement activities, and (11) result dissemination. The paper is based on a recently completed study about engaging individuals with Duchenne muscular dystrophy (DMD) and their caregivers in determining the patient-centeredness of DMD care guidelines.

Suggested Citation

  • Dmitry Khodyakov & Sean Grant & Brian Denger & Kathi Kinnett & Ann Martin & Holly Peay & Ian Coulter, 2020. "Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(1), pages 11-21, February.
    • Handle: RePEc:spr:patien:v:13:y:2020:i:1:d:10.1007_s40271-019-00389-4
    DOI: 10.1007/s40271-019-00389-4
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    References listed on IDEAS

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    1. Durhane Wong-Rieger, 2017. "Author’s Reply to Braillon: “Moving from Patient Advocacy to Partnership: A Long and Bumpy Road”," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(4), pages 505-505, August.
    2. Leela Barham, 2011. "Public and Patient Involvement at the UK National Institute for Health and Clinical Excellence," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 4(1), pages 1-10, January.
    3. 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.
    4. Andrea Young & Devidas Menon & Jackie Street & Walla Al-Hertani & Tania Stafinski, 2018. "Engagement of Canadian Patients with Rare Diseases and Their Families in the Lifecycle of Therapy: A Qualitative Study," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(3), pages 353-359, June.
    5. Durhane Wong-Rieger, 2017. "Moving from Patient Advocacy to Partnership: A Long and Bumpy Road," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 271-276, June.
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    Cited by:

    1. Katherine L. Nelson & Byron J. Powell & Brent Langellier & Félice Lê-Scherban & Paul Shattuck & Kimberly Hoagwood & Jonathan Purtle, "undated". "State Policies that Impact the Design of Children’s Mental Health Services: A Modified Delphi Study," Mathematica Policy Research Reports 27128eeb589049fca3f36053b, Mathematica Policy Research.

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