Mandating patient and public involvement in research: is it cause for concern?
DOI:
https://doi.org/10.17267/2675-021Xevidence.2024.e5681Keywords:
Research, Patient and Public Involvement, Co-Production, TrainingAbstract
BACKGROUND: Public and Patient Involvement [PPI] is a relatively new concept within the field of research. However, it involves a process whereby service users/patients are involved in every step of the research process. Recently, The Lancet Psychiatry and the Journal of Mental Health released a mandate for all future submissions to have PPI representation clearly documented in the manuscripts. This, although welcome, raises the fear of tokenistic practices in research production and dissemination. This has resulted in a space of contentious fluidity developing as researchers and indeed PPI representatives struggle to ascertain what exactly PPI is all about. Only when these questions are answered, will we, as scholars, determine whether to actively use the approach or let it die off like a burnt out candle
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(1) Vinnicombe S, Bianchim MS, Noyes J. A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance. BMC Public Health. 2023;23:1271. https://doi.org/10.1186/s12889-023-15937-9 DOI: https://doi.org/10.1186/s12889-023-15937-9
(2) Arumugam A, Philips LR, Moore A, Kumaran SD, Sampath KK, Migliorini F, et al. Patient and public involvement in research: a review of practical resources for young investigators. BMC Rheumatology. 2023;7:2. https://doi.org/10.1186/s41927-023-00327-w DOI: https://doi.org/10.1186/s41927-023-00327-w
(3) Building a Better Health Service, Mental Health Services. A National Framework for Recovery in Mental Health 2018-2020. 2020. [Accessed 2024 February 05th]. Available from https://www.hse.ie/eng/services/list/4/mental-health-services/mental-health-engagement-and-recovery/resources-information-and-publications/national-framework-for-recovery-in-mental-health.pdf
(4) Norton MJ. Implementing co-production in traditional statutory mental health services. Mental Health Practice. 2019;27(3). https://doi.org/10.7748/mhp.2019.e1304 DOI: https://doi.org/10.7748/mhp.2019.e1304
(5) Gilfoyle M, MacFarlane A, Hannigan A, Niranjan V, Hughes Z, Salsberg J. The public and patient involvement imperative in Ireland: Building on policy drivers. Frontiers of Public Health. 2022;10(10):1038409. https://doi.org/10.3389/fpubh.2022.1038409 DOI: https://doi.org/10.3389/fpubh.2022.1038409
(6) Healt Research Board, Irish Research Council. Embedding Equality, Diversity and Inclusion (EDI) across the PPI Ignite Network: Our Strategy. 2021. [Accessed 2024 February 05th]. Available from: https://ppinetwork.ie/wp-content/uploads/2022/01/PPI-Ignite-Network-EDI-Strategy-Dec2021.pdf
(7) Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Family Practice. 2017;34(3):290-295. https://doi.org/10.1093/fampra/cmw097 DOI: https://doi.org/10.1093/fampra/cmw097
(8) Romsland GI, Milosavljevic KL, Andreassen TA. Facilitating non-tokenistic user involvement in research. Research Involvement and Engagement.2019;5:18. https://doi.org/10.1186/s40900-019-0153-3 DOI: https://doi.org/10.1186/s40900-019-0153-3
(9) Rose D, Beresford P. PPI in psychiatry and the problem of knowledge. BMC Psychiatry. 2024;24(52). https://doi.org/10.1186/s12888-023-05398-0 DOI: https://doi.org/10.1186/s12888-023-05398-0
(10) Hammoud S, Alsabek L, Rogers L, Mcauliffe E. Systematic review on the frequency and quality of reporting patient and public involvement in patient safety research. BMC Health Service Research. 2024;24:532. https://doi.org/10.1186/s12913-024-11021-z DOI: https://doi.org/10.1186/s12913-024-11021-z
(11) PSI-STAR. About PSI-STAR. [Accessed 2024 May 09th]. Available from: https://psistarstudy.eu/about/
(12) University of Limerick. Public and Patient Involvement in Health Research – Professional Diploma. [Accessed 2024 February 05th]. Available from: https://www.ul.ie/gps/courses/public-and-patient-involvement-in-health-research-professional-diploma
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