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Practical Considerations for Using Online Methods to Engage Patients in Guideline Development

Author

Listed:
  • Sean Grant

    (RAND Corporation)

  • Glen S. Hazlewood

    (University of Calgary)

  • Holly L. Peay

    (RTI International)

  • Ann Lucas

    (Parent Project Muscular Dystrophy)

  • Ian Coulter

    (RAND Corporation)

  • Arlene Fink

    (University of California–Los Angeles)

  • Dmitry Khodyakov

    (RAND Corporation)

Abstract

Clinical practice guidelines (CPGs) have been widely used in healthcare policy, practice, and for suggesting future research. As patients increasingly become involved in CPG development to produce patient-centered recommendations, more research is needed on methods to engage patients, particularly methods allowing for scalable engagement of large, diverse, and geographically distributed groups of patients. In this article, we discuss practical considerations for using online methods to engage patients in CPG development. To inform this discussion, we conducted a rapid, systematic review of literature on patient involvement in CPG development and used qualitative evidence synthesis techniques to make inferences about potential advantages and challenges of using online methods to engage patients in this context. We identified 79 articles containing information about involving patients in CPG development. Potential advantages include the ability of online methods to facilitate greater openness and honesty by patients, as well as to reflect the diversity of patient views, which in turn further improve the utility of CPGs. Potential challenges of using online methods may include the extra skill, time, and certain types of resources that may be needed for patient engagement, as well as the difficulty engaging specific patient populations. However, these challenges are mitigated by growing calls for patient engagement as normative for CPG development in addition to patients’ increasing familiarity with online technologies. These practical considerations should be examined empirically as guideline development groups further explore the appropriateness of using online methods to engage patients across different stages of CPG development.

Suggested Citation

  • 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.
  • Handle: RePEc:spr:patien:v:11:y:2018:i:2:d:10.1007_s40271-017-0280-6
    DOI: 10.1007/s40271-017-0280-6
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    References listed on IDEAS

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    1. 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.
    2. 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.
    3. Petra Boelens & Claire Taylor & Geoffrey Henning & Perla Marang-van de Mheen & Eloy Espin & Theo Wiggers & Jola Gore-Booth & Barbara Moss & Vincenzo Valentini & Cornelis Velde, 2014. "Involving Patients in a Multidisciplinary European Consensus Process and in the Development of a ‘Patient Summary of the Consensus Document for Colon and Rectal Cancer Care’," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 7(3), pages 261-270, September.
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    Cited by:

    1. 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).
    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. 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.

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