IDEAS home Printed from https://ideas.repec.org/a/eee/hepoli/v95y2010i1p10-23.html
   My bibliography  Save this article

Public involvement at the design stage of primary health research: A narrative review of case examples

Author

Listed:
  • Boote, Jonathan
  • Baird, Wendy
  • Beecroft, Claire

Abstract

Objective To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies.Design Systematic literature search and narrative review.Findings Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified.Conclusions The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out.

Suggested Citation

  • 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.
    • Handle: RePEc:eee:hepoli:v:95:y:2010:i:1:p:10-23
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0168-8510(09)00292-9
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    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.
    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. Julia Keenan & Fiona Poland & Jonathan Boote & Amanda Howe & Helena Wythe & Anna Varley & Penny Vicary & Lisa Irvine & Amander Wellings, 2019. "‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed," PLOS ONE, Public Library of Science, vol. 14(5), pages 1-28, May.
    2. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    3. Kathryn Oliver & Warren Pearce, 2017. "Three lessons from evidence-based medicine and policy: increase transparency, balance inputs and understand power," Palgrave Communications, Palgrave Macmillan, vol. 3(1), pages 1-7, December.
    4. 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.
    5. Anand Chand & Suwastika Naidu, 2017. "Health Care Service Quality and Availability of Skilled Health Workforce: A Panel Data Modelling of the UK, USA and Israel," Modern Applied Science, Canadian Center of Science and Education, vol. 11(10), pages 152-152, October.
    6. 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.
    7. 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.
    8. Ailian Zhang & Mengmeng Pan, 2020. "“Smart Process” of Medical Innovation: The Synergism Based on Network and Physical Space," IJERPH, MDPI, vol. 17(11), pages 1-17, May.
    9. Elizabeth Manafò & Lisa Petermann & Virginia Vandall-Walker & Ping Mason-Lai, 2018. "Patient and public engagement in priority setting: A systematic rapid review of the literature," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-18, March.
    10. Gaasterland, C.M.W. & Jansen-van der Weide, M.C. & Vroom, E. & Leeson-Beevers, K. & Kaatee, M. & Kaczmarek, R. & Bartels, B. & van der Pol, W.L. & Roes, K.C.B. & van der Lee, J.H., 2018. "The POWER-tool: Recommendations for involving patient representatives in choosing relevant outcome measures during rare disease clinical trial design," Health Policy, Elsevier, vol. 122(12), pages 1287-1294.
    11. Erdem, Seda & Campbell, Danny & Thompson, Carl, 2014. "Elimination and selection by aspects in health choice experiments: Prioritising health service innovations," Journal of Health Economics, Elsevier, vol. 38(C), pages 10-22.
    12. Modigh, Anton & Sampaio, Filipa & Moberg, Linda & Fredriksson, Mio, 2021. "The impact of patient and public involvement in health research versus healthcare: A scoping review of reviews," Health Policy, Elsevier, vol. 125(9), pages 1208-1221.
    13. Erdem, Seda & Campbell, Danny & Thompson, Carl, 2014. "Addressing elimination and selection by aspects decision rules in discrete choice experiments: does it matter?," 2014 Annual Meeting, July 27-29, 2014, Minneapolis, Minnesota 169839, Agricultural and Applied Economics Association.
    14. Westerink, Henrike J. & Oirbans, Tom & Garvelink, Mirjam M. & van Uden-Kraan, Cornelia F. & Zouitni, Ouisam & Bart, Hans A.J. & van der Wees, Philip J. & van der Nat, Paul B., 2023. "Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review," Health Policy, Elsevier, vol. 138(C).
    15. 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.

    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. 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. 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.
    4. 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.
    5. 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.
    6. 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.
    7. 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.
    8. 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.
    9. 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.
    10. 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.
    11. 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.
    12. Goven, Joanna, 2008. "Assessing genetic testing: Who are the "lay experts"?," Health Policy, Elsevier, vol. 85(1), pages 1-18, January.
    13. Serrano-Aguilar, P. & Trujillo-Martín, M.M. & Ramos-Goñi, J.M. & Mahtani-Chugani, V. & Perestelo-Pérez, L. & Posada-de la Paz, M., 2009. "Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias," Social Science & Medicine, Elsevier, vol. 69(6), pages 920-925, September.
    14. 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.
    15. 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.
    16. 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.
    17. 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.
    18. 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.
    19. 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.
    20. Jane McKeown & Amanda Clarke & Christine Ingleton & Julie Repper, 2010. "Actively involving people with dementia in qualitative research," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(13‐14), pages 1935-1943, July.

    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:eee:hepoli:v:95:y:2010:i:1:p:10-23. 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: Catherine Liu or the person in charge (email available below). General contact details of provider: http://www.elsevier.com/locate/healthpol .

    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.