IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v13y2020i1d10.1007_s40271-019-00389-4.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-019-00389-4
    File Function: Abstract
    Download Restriction: Access to the full text of the articles in this series is restricted.
    File URL: https://libkey.io/10.1007/s40271-019-00389-4?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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. 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.
    5. 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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    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.
    2. Olivia Magwood & Alison Riddle & Jennifer Petkovic & Lyubov Lytvyn & Joanne Khabsa & Pearl Atwere & Elie A. Akl & Pauline Campbell & Vivian Welch & Maureen Smith & Reem A. Mustafa & Heather Limburg & , 2022. "PROTOCOL: Barriers and facilitators to stakeholder engagement in health guideline development: A qualitative evidence synthesis," Campbell Systematic Reviews, John Wiley & Sons, vol. 18(2), June.
    3. Josie Messina & David Grainger, 2012. "A Pilot Study to Identify Areas for Further Improvements in Patient and Public Involvement in Health Technology Assessments for Medicines," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(3), pages 199-211, September.
    4. Lopes, Edilene & Carter, Drew & Street, Jackie, 2015. "Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia," Social Science & Medicine, Elsevier, vol. 135(C), pages 84-91.
    5. Paula K. Lorgelly, 2021. "Patient and Public Involvement in Health Economics and Outcomes Research," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 379-380, July.
    6. Bonetti, Lisa & Lai, Alessandro & Stacchezzini, Riccardo, 2023. "Stakeholder engagement in the public utility sector: Evidence from Italian ESG reports," Utilities Policy, Elsevier, vol. 84(C).
    7. Alain Braillon, 2017. "Comment on: “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 503-503, August.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:patien:v:13:y:2020:i:1:d:10.1007_s40271-019-00389-4. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.