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

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  • 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.

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  • 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
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    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.
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    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.

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