IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v2y2009i3p179-190.html
   My bibliography  Save this article

Public Involvement in Setting a National Research Agenda

Author

Listed:
  • Sandy Oliver
  • David Armes
  • Gill Gyte

Abstract

Background: A growing body of literature supports the inclusion of patients, other service users, and the wider public in guiding health technology assessment, particularly in relation to interventions and outcomes for evaluative studies. Objective: To describe the input and influence of public involvement in setting the agenda for a national research program. Methods: The data source was the commissioned research of the UK National Health Service Health Technology Assessment (HTA) program, 1999–2004. The study consisted of a mixed methods evaluation employing document analyses, key informant interviews, and structured non-participant observations. Routine management records of the HTA program were examined for public influence on research topics. The nature and influence of contributions from the public were compared with those of other experts. Structured observations of advisory panel meetings investigated how discussion and decisions related to patient and public perspectives and how panel members responded to public input to the program. Semi-structured interviews gathered the perceptions of staff and advisory panel members. Results: The public provided unique contributions both as external experts and as panel members. The value and influence of many of these contributions were acknowledged by staff and panel members. Input from external public experts was least where recruitment was passive (through a website) and where contributions were required in a research question format that may have been unfamiliar to non-researchers. However, public influence at this stage was at least of the same order as that of professional suggestions. Input was most where recruitment effort was greater, where contributions could be made in an open format, and where the responsibility for integrating these into a research question format lay with research program staff. Public experts contributing at this stage often influenced research plans. Their contributions resulted in some important changes, including making patient and carer perspectives explicit, changing the focus of the research, adding new outcomes, refuting the need for the planned research, providing up-to-date prevalence data, and providing plain English background text. At their best, public members of advisory panels were seen as providing useful comment and encouraging greater sensitivity to patient perspectives among other panel members. At their worst, they were seen as lobbying for particular patient groups. Conclusions: Public involvement has influenced decisions about research commissioned by the HTA program with only relatively minor changes to the procedures and resources for managing the program required. This results in outcomes research that incorporates patient and public preferences and values, and that is freely available for evidence-informed health services. Copyright Adis Data Information BV 2009

Suggested Citation

  • 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.
  • Handle: RePEc:spr:patien:v:2:y:2009:i:3:p:179-190
    DOI: 10.2165/11314860-000000000-00000
    as

    Download full text from publisher

    File URL: http://hdl.handle.net/10.2165/11314860-000000000-00000
    Download Restriction: Access to full text is restricted to subscribers.

    File URL: https://libkey.io/10.2165/11314860-000000000-00000?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. 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.
    3. Abelson, Julia & Giacomini, Mita & Lehoux, Pascale & Gauvin, Francois-Pierre, 2007. "Bringing `the public' into health technology assessment and coverage policy decisions: From principles to practice," Health Policy, Elsevier, vol. 82(1), pages 37-50, June.
    Full references (including those not matched with items on IDEAS)

    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. Elberse, Janneke Elisabeth & Pittens, Carina Anna Cornelia Maria & de Cock Buning, Tjard & Broerse, Jacqueline Elisabeth Willy, 2012. "Patient involvement in a scientific advisory process: Setting the research agenda for medical products," Health Policy, Elsevier, vol. 107(2), pages 231-242.
    2. Jabbar, Amina M. & Abelson, Julia, 2011. "Development of a framework for effective community engagement in Ontario, Canada," Health Policy, Elsevier, vol. 101(1), pages 59-69, June.
    3. 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.
    4. Li, Kathy K. & Abelson, Julia & Giacomini, Mita & Contandriopoulos, Damien, 2015. "Conceptualizing the use of public involvement in health policy decision-making," Social Science & Medicine, Elsevier, vol. 138(C), pages 14-21.
    5. Mauro Serapioni & Pedro Lopes Ferreira & Patrícia Antunes, 2014. "Participação em Saúde: Conceitos e Conteúdos," Notas Económicas, Faculty of Economics, University of Coimbra, issue 40, pages 26-42, December.
    6. Augustine Adomah-Afari & Theophilus Maloreh-Nyamekye, 2019. "Enhancing Patient Satisfaction - Relationship Marketing Strategies of Two Specialist Hospitals in Accra, Ghana," International Journal of Social and Administrative Sciences, Asian Economic and Social Society, vol. 4(2), pages 213-231, June.
    7. Howlett, Michael & Migone, Andrea Riccardo, 2010. "The Canadian biotechnology regulatory regime: The role of participation," Technology in Society, Elsevier, vol. 32(4), pages 280-287.
    8. Meng, Jie & Layton, Roger & Huang, Yimin, 2016. "Why do some consumers shop in this pharmacy? A cross-check of vulnerable characteristics and store types," Journal of Retailing and Consumer Services, Elsevier, vol. 30(C), pages 116-130.
    9. 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.
    10. 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.
    11. Anthony J. Culyer & Yvonne Bombard, 2012. "An Equity Framework for Health Technology Assessments," Medical Decision Making, , vol. 32(3), pages 428-441, May.
    12. Anthony J Culyer & Yvonne Bombard, 2011. "An Equity Checklist: a Framework for Health Technology Assessments," Working Papers 062cherp, Centre for Health Economics, University of York.
    13. 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.
    14. 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.
    15. Marika Burda & Frans Horst & Marjan Akker & Alexander Stork & Ilse Mesters & Silvia Bours & Maarten Ploeg & Bjorn Winkens & Johannes Knottnerus, 2012. "Harvesting Experiential Expertise to Support Safe Driving for People with Diabetes Mellitus," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(4), pages 251-264, December.
    16. Fischer, Katharina E. & Rogowski, Wolf H. & Leidl, Reiner & Stollenwerk, Björn, 2013. "Transparency vs. closed-door policy: Do process characteristics have an impact on the outcomes of coverage decisions? A statistical analysis," Health Policy, Elsevier, vol. 112(3), pages 187-196.
    17. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Casebeer, Ann & Martin, Elisabeth & Mackean, Gail, 2007. "Examining the role of context in the implementation of a deliberative public participation experiment: Results from a Canadian comparative study," Social Science & Medicine, Elsevier, vol. 64(10), pages 2115-2128, May.
    18. Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.
    19. Bullinger, Angelika C. & Rass, Matthias & Adamczyk, Sabrina & Moeslein, Kathrin M. & Sohn, Stefan, 2012. "Open innovation in health care: Analysis of an open health platform," Health Policy, Elsevier, vol. 105(2), pages 165-175.
    20. Parkes, Jacqueline H. & Pyer, Michelle & Wray, Paula & Taylor, Jane, 2014. "Partners in projects: Preparing for public involvement in health and social care research," Health Policy, Elsevier, vol. 117(3), pages 399-408.

    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:2:y:2009:i:3:p:179-190. 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.