IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v14y2021i4d10.1007_s40271-020-00424-9.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-020-00424-9
    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/s40271-020-00424-9?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. 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.
    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. 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.

    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. Rod Mccoll & Yann Truong & Antonella La Rocca, 2019. "Service guarantees as a base for positioning in B2B," Post-Print hal-02326105, HAL.
    2. Magda Aguiar & Mark Harrison & Sarah Munro & Tiasha Burch & K. Julia Kaal & Marie Hudson & Nick Bansback & Tracey-Lea Laba, 2021. "Designing Discrete Choice Experiments Using a Patient-Oriented Approach," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 389-397, July.
    3. David J. Mott & Laura Ternent & Luke Vale, 2023. "Do preferences differ based on respondent experience of a health issue and its treatment? A case study using a public health intervention," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(3), pages 413-423, April.
    4. Merle Gijsbers & Iris Elise Keizer & Stephanie Else Schouten & Janneke Louise Trompert & Catharina G. M. Groothuis-Oudshoorn & Janine Astrid Til, 2021. "Public Preferences in Priority Setting when Admitting Patients to the ICU During the COVID-19 Crisis: A Pilot Study," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(3), pages 331-338, May.
    5. Jackson, Louise & Al-Janabi, Hareth & Roberts, Tracy & Ross, Jonthan, 2021. "Exploring young people's preferences for STI screening in the UK: A qualitative study and discrete choice experiment," Social Science & Medicine, Elsevier, vol. 279(C).
    6. Simon Deeming & Kim Edmunds & Alice Knight & Andrew Searles & Anthony P. Shakeshaft & Christopher M. Doran, 2022. "A Benefit-Cost Analysis of BackTrack, a Multi-Component, Community-Based Intervention for High-Risk Young People in a Rural Australian Setting," IJERPH, MDPI, vol. 19(16), pages 1-12, August.
    7. Adewole, Ayooluwa & Shipworth, Michelle & Lemaire, Xavier & Sanderson, Danielle, 2023. "Peer-to-Peer energy trading, independence aspirations and financial benefits among Nigerian households," Energy Policy, Elsevier, vol. 174(C).
    8. Cleland, Jennifer & Porteous, Terry & Ejebu, Ourega-Zoé & Ryan, Mandy & Skåtun, Diane, 2022. "Won't you stay just a little bit longer? A discrete choice experiment of UK doctors’ preferences for delaying retirement," Health Policy, Elsevier, vol. 126(1), pages 60-68.
    9. Damon Willems & Eva-Lotta Hinzpeter & Hessel H. Zee & Christopher J. Sayed & John R. Ingram & Charlotte Beaudart & Silvia M. A. A. Evers & Mickael Hiligsmann, 2023. "Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 16(2), pages 153-164, March.
    10. Osborne, Matthew & Lambe, Fiona & Ran, Ylva & Dehmel, Naira & Tabacco, Giovanni Alberto & Balungira, Joshua & Pérez-Viana, Borja & Widmark, Erik & Holmlid, Stefan & Verschoor, Arjan, 2022. "Designing development interventions: The application of service design and discrete choice experiments in complex settings," World Development, Elsevier, vol. 158(C).
    11. Colene Bentley & Sara Izadi-Najafabadi & Adam Raymakers & Helen McTaggart-Cowan, 2022. "Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 15(4), pages 497-507, July.
    12. Lina Isacs & Cecilia Håkansson & Therese Lindahl & Ulrika Gunnarsson-Östling & Pernilla Andersson, 2024. "‘I didn’t count “willingness to pay†as part of the value’: Monetary valuation through respondents’ perspectives," Environmental Values, , vol. 33(2), pages 163-188, April.
    13. Gregory Merlo & Mieke Driel & Lisa Hall, 2020. "Systematic review and validity assessment of methods used in discrete choice experiments of primary healthcare professionals," Health Economics Review, Springer, vol. 10(1), pages 1-9, December.
    14. Galárraga, Omar & Kuo, Caroline & Mtukushe, Bulelwa & Maughan-Brown, Brendan & Harrison, Abigail & Hoare, Jackie, 2020. "iSAY (incentives for South African youth): Stated preferences of young people living with HIV," Social Science & Medicine, Elsevier, vol. 265(C).
    15. Marco Boeri & Alan J. McMichael & Joseph P. M. Kane & Francis A. O’Neill & Frank Kee, 2018. "Physician-Specific Maximum Acceptable Risk in Personalized Medicine: Implications for Medical Decision Making," Medical Decision Making, , vol. 38(5), pages 593-600, July.
    16. Ruixuan Jiang & Eleanor Pullenayegum & James W. Shaw & Axel Mühlbacher & Todd A. Lee & Surrey Walton & Thomas Kohlmann & Richard Norman & A. Simon Pickard, 2023. "Comparison of Preferences and Data Quality between Discrete Choice Experiments Conducted in Online and Face-to-Face Respondents," Medical Decision Making, , vol. 43(6), pages 667-679, August.
    17. Sanjeewa Kularatna & Michelle Allen & Ruvini M. Hettiarachchi & Fiona Crawford-Williams & Sameera Senanayake & David Brain & Nicolas H. Hart & Bogda Koczwara & Carolyn Ee & Raymond J. Chan, 2023. "Cancer Survivor Preferences for Models of Breast Cancer Follow-Up Care: Selecting Attributes for Inclusion in a Discrete Choice Experiment," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 16(4), pages 371-383, July.
    18. Kim Edmunds & Laura Wall & Scott Brown & Andrew Searles & Anthony P. Shakeshaft & Christopher M. Doran, 2021. "Exploring Community-Based Options for Reducing Youth Crime," IJERPH, MDPI, vol. 18(10), pages 1-12, May.
    19. Sarah Costa & Dean A. Regier & Adam J. N. Raymakers & Samantha Pollard, 2021. "Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(2), pages 187-196, March.

    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:14:y:2021:i:4:d:10.1007_s40271-020-00424-9. 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.