IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v10y2017i3d10.1007_s40271-016-0206-8.html
   My bibliography  Save this article

Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges

Author

Listed:
  • Ahmed Rashid

    (National Institute for Health and Care Excellence (NICE))

  • Victoria Thomas

    (National Institute for Health and Care Excellence (NICE))

  • Toni Shaw

    (National Institute for Health and Care Excellence (NICE))

  • Gillian Leng

    (National Institute for Health and Care Excellence (NICE))

Abstract

Clinical guidelines and health technology assessments are valuable instruments to improve the quality of healthcare delivery and aim to integrate the best available evidence with real-world, expert context. The role of patient and public involvement in their development has grown in recent decades, and this article considers the international literature exploring aspects of this participation, including the integration of experiential and scientific knowledge, recruitment strategies, models of involvement, stages of involvement, and methods of evaluation. These developments have been underpinned by the parallel rise of public involvement and evidence-based medicine as important concepts in health policy. Improving the recruitment of guideline group chairs, widening evidence reviews to include patient preference studies, adapting guidance presentation to highlight patient preference points and providing clearer instructions on how patient organisations can submit their intelligence are emerging proposals that may further enhance patient and public involvement in their processes.

Suggested Citation

  • Ahmed Rashid & Victoria Thomas & Toni Shaw & Gillian Leng, 2017. "Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 277-282, June.
  • Handle: RePEc:spr:patien:v:10:y:2017:i:3:d:10.1007_s40271-016-0206-8
    DOI: 10.1007/s40271-016-0206-8
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-016-0206-8
    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/s40271-016-0206-8?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. Boote, Jonathan & Telford, Rosemary & Cooper, Cindy, 2002. "Consumer involvement in health research: a review and research agenda," Health Policy, Elsevier, vol. 61(2), pages 213-236, August.
    2. Gauvin, Francois-Pierre & Abelson, Julia & Giacomini, Mita & Eyles, John & Lavis, John N., 2010. ""It all depends": Conceptualizing public involvement in the context of health technology assessment agencies," Social Science & Medicine, Elsevier, vol. 70(10), pages 1518-1526, May.
    3. Bombard, Yvonne & Abelson, Julia & Simeonov, Dorina & Gauvin, Francois-Pierre, 2011. "Eliciting ethical and social values in health technology assessment: A participatory approach," Social Science & Medicine, Elsevier, vol. 73(1), pages 135-144, July.
    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. Colombani, Françoise & Encrenaz, Gaëlle & Sibé, Matthieu & Quintard, Bruno & Ravaud, Alain & Saillour-Glénisson, Florence, 2022. "Development of an evidence-based reference framework for care coordination with a focus on the micro level of integrated care: A mixed method design study combining scoping review of reviews and nomin," Health Policy, Elsevier, vol. 126(3), pages 245-261.

    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. Bukola Mary Ibitoye & Bernie Garrett & Manon Ranger & Jennifer Stinson, 2023. "Conducting Patient-Oriented Research in Low-Income and Middle-Income Countries: A Scoping Review," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 16(1), pages 19-29, January.
    2. Elena Nicod, 2017. "Why do health technology assessment coverage recommendations for the same drugs differ across settings? Applying a mixed methods framework to systematically compare orphan drug decisions in four Europ," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 18(6), pages 715-730, July.
    3. O'Donnell, Maire & Entwistle, Vikki, 2004. "Consumer involvement in decisions about what health-related research is funded," Health Policy, Elsevier, vol. 70(3), pages 281-290, December.
    4. Pivik, Jayne & Rode, Elisabeth & Ward, Christopher, 2004. "A consumer involvement model for health technology assessment in Canada," Health Policy, Elsevier, vol. 69(2), pages 253-268, August.
    5. Steffensen, Mette B. & Matzen, Christina L. & Wadmann, Sarah, 2022. "Patient participation in priority setting: Co-existing participant roles," Social Science & Medicine, Elsevier, vol. 294(C).
    6. Imke Schilling & Ansgar Gerhardus, 2017. "Methods for Involving Older People in Health Research—A Review of the Literature," IJERPH, MDPI, vol. 14(12), pages 1-20, November.
    7. Dukhanin, Vadim & Searle, Alexandra & Zwerling, Alice & Dowdy, David W. & Taylor, Holly A. & Merritt, Maria W., 2018. "Integrating social justice concerns into economic evaluation for healthcare and public health: A systematic review," Social Science & Medicine, Elsevier, vol. 198(C), pages 27-35.
    8. Rachel Baker & John Wildman & Helen Mason & Cam Donaldson, 2014. "Q‐Ing For Health—A New Approach To Eliciting The Public'S Views On Health Care Resource Allocation," Health Economics, John Wiley & Sons, Ltd., vol. 23(3), pages 283-297, March.
    9. Sandy Oliver & David Armes & Gill Gyte, 2009. "Public Involvement in Setting a National Research Agenda," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 2(3), pages 179-190, September.
    10. Heather J. Bray & Jennifer Stone & Lillith Litchfield & Kara L. Britt & John L. Hopper & Wendy V. Ingman, 2022. "Together Alone: Going Online during COVID-19 Is Changing Scientific Conferences," Challenges, MDPI, vol. 13(1), pages 1-13, February.
    11. Ann Marie Crosse & Margaret M. Barry & Mary Jo Lavelle & Jane Sixsmith, 2021. "Bridging Knowledge Systems: A Community-Participatory Approach to EcoHealth," IJERPH, MDPI, vol. 18(23), pages 1-16, November.
    12. Caron-Flinterman, J. Francisca & Broerse, Jacqueline E.W. & Bunders, Joske F.G., 2005. "The experiential knowledge of patients: a new resource for biomedical research?," Social Science & Medicine, Elsevier, vol. 60(11), pages 2575-2584, June.
    13. Regier, Dean A. & Bentley, Colene & Mitton, Craig & Bryan, Stirling & Burgess, Michael M. & Chesney, Ellen & Coldman, Andy & Gibson, Jennifer & Hoch, Jeffrey & Rahman, Syed & Sabharwal, Mona & Sawka, , 2014. "Public engagement in priority-setting: Results from a pan-Canadian survey of decision-makers in cancer control," Social Science & Medicine, Elsevier, vol. 122(C), pages 130-139.
    14. Cavazza, Marianna & Jommi, Claudio, 2012. "Stakeholders involvement by HTA Organisations: Why is so different?," Health Policy, Elsevier, vol. 105(2), pages 236-245.
    15. MacNeil, Maggie & Koch, Melissa & Kuspinar, Ayse & Juzwishin, Don & Lehoux, Pascale & Stolee, Paul, 2019. "Enabling health technology innovation in Canada: Barriers and facilitators in policy and regulatory processes," Health Policy, Elsevier, vol. 123(2), pages 203-214.
    16. Boote, Jonathan & Baird, Wendy & Sutton, Anthea, 2011. "Public involvement in the systematic review process in health and social care: A narrative review of case examples," Health Policy, Elsevier, vol. 102(2), pages 105-116.
    17. Noerreslet, Mikkel & Larsen, Jakob B. & Traulsen, Janine M., 2005. "The medicine user--Lost in translation?: Analysis of the official political debate prior to the deregulation of the Danish medicine distribution system," Social Science & Medicine, Elsevier, vol. 61(8), pages 1733-1740, October.
    18. Hampson, G. & Towse, A. & Henshall, C., 2017. "How can HTA meet the needs of health system and government decision makers?," Briefings 001836, Office of Health Economics.
    19. Boote, Jonathan & Baird, Wendy & Beecroft, Claire, 2010. "Public involvement at the design stage of primary health research: A narrative review of case examples," Health Policy, Elsevier, vol. 95(1), pages 10-23, April.
    20. Goven, Joanna, 2008. "Assessing genetic testing: Who are the "lay experts"?," Health Policy, Elsevier, vol. 85(1), pages 1-18, January.

    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:10:y:2017:i:3:d:10.1007_s40271-016-0206-8. 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.