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Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery‐Based Medical Research Institute

Health expectations : an international journal of public participation in health care and health policy, 2024-02, Vol.27 (1), p.n/a [Peer Reviewed Journal]

2024 The Authors. published by John Wiley & Sons Ltd. ;2024. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;ISSN: 1369-6513 ;EISSN: 1369-7625 ;DOI: 10.1111/hex.13968

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  • Title:
    Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery‐Based Medical Research Institute
  • Author: Smith, Robyn A. ; Slocombe, Judith ; Cockwill, Jo ; Minas, Kathy ; Kiossoglou, George ; Gray, Katya ; Lawrence, William ; Iddles, Michelle ; Scott, Clare ; O'Reilly, Lorraine A.
  • Subjects: Application ; Citizen participation ; Community ; consumer ; Consumer behavior ; Consumers ; Data analysis ; Discovery ; Editing ; evaluation ; Funding ; Interviews ; Laboratories ; Medical research ; Membership ; patient and public involvement ; patient engagement ; Patients ; Polls & surveys ; preclinical research ; Project evaluation ; Public involvement ; Qualitative analysis ; Qualitative research ; R&D ; Research & development ; Research centers ; Research funding ; Researchers ; Statistical analysis ; Surveys ; Voice communication
  • Is Part Of: Health expectations : an international journal of public participation in health care and health policy, 2024-02, Vol.27 (1), p.n/a
  • Description: Background and Context Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to ‘give back’, to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript.
  • Publisher: Oxford: John Wiley & Sons, Inc
  • Language: English
  • Identifier: ISSN: 1369-6513
    EISSN: 1369-7625
    DOI: 10.1111/hex.13968
  • Source: Journals@Ovid Open Access Journal Collection Rolling
    PubMed Central
    Wiley Blackwell Open Access Titles
    Coronavirus Research Database
    ProQuest Central
    DOAJ Directory of Open Access Journals
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