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Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development

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  • Elizabeth Clearfield

    (Center for Medical Technology Policy)

  • Ellen Tambor

    (Center for Medical Technology Policy)

  • Ellen M. Janssen

    (Center for Medical Technology Policy)

  • Donna A. Messner

    (Center for Medical Technology Policy)

Abstract

Core outcome sets (COS) are becoming increasingly popular in clinical research and can provide important inputs for further health economics and outcomes research (HEOR) studies. Use of standard, consistently reported outcomes can demonstrate and allow differentiation of the effectiveness and value of different treatments. Incorporating patient values during COS development increases the patient centeredness of evidence available across decision-making contexts. However, the approach to meaningful patient engagement in the COS process is evolving and poses both unique challenges and opportunities. We describe an approach to patient-centered COS development and discuss challenges and adaptations to improve engagement across COS projects. We provide examples from our experience in patient engagement for COS development using three completed COS projects. This approach includes patient engagement in terms of partnering with patient organizations, orientation and training, and the consensus process. Including COS in clinical development programs and HEOR will ensure that relevant, consistent outcomes are available for healthcare decision making and should result in faster access to high-value and novel therapies for patients. Patient-centered COS development increases the likelihood that further HEOR studies and decisions made using the COS are relevant to patients.

Suggested Citation

  • Elizabeth Clearfield & Ellen Tambor & Ellen M. Janssen & Donna A. Messner, 2021. "Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 413-420, July.
    • Handle: RePEc:spr:patien:v:14:y:2021:i:4:d:10.1007_s40271-020-00424-9
    DOI: 10.1007/s40271-020-00424-9
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    References listed on IDEAS

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    1. Caroline Vass & Dan Rigby & Katherine Payne, 2017. "The Role of Qualitative Research Methods in Discrete Choice Experiments," Medical Decision Making, , vol. 37(3), pages 298-313, April.
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    1. Melanie J. Cozad & Lisa C. Lindley & Kaitlyn Crosby & Noor Alshareef & Ann Blair Kennedy & Gulzar Merchant & Pam Evans & Ronnie D. Horner, 2023. "Patient Goals for Living with Rheumatoid Arthritis: A Qualitative Study," Clinical Nursing Research, , vol. 32(1), pages 40-48, January.

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