Co-design of an Australian health service framework and implementation plan for involving consumers in research

Laura Ryan; Rachel Wenke; Joan Carlini; Kelly. A. Weir; Margaret Shapiro; Noela Baglot; Magnolia Cardona; Georgia Tobiano; Sally Sargeant; Rachel Muir; Laetitia Hattingh

doi:10.1071/PU24021

RESEARCH ARTICLE (Open Access)

Co-design of an Australian health service framework and implementation plan for involving consumers in research

Laura Ryan ^A ^* , Rachel Wenke ^A ^B ^C , Joan Carlini ^D ^E , Kelly. A. Weir ^F ^G , Margaret Shapiro ^D , Noela Baglot ^D , Magnolia Cardona ^H ^I , Georgia Tobiano ^J ^K , Sally Sargeant ^L , Rachel Muir ^M ^N ^O Laetitia Hattingh ^A ^P ^Q

+ Author Affiliations

- Author Affiliations

^A Allied Health Research, Gold Coast Hospital and Health Service, Southport, Qld 4215, Australia.

^B School of Health Sciences & Social Work, Griffith University, Qld 4221, Australia.

^C Faculty of Health Sciences and Medicine, Bond University, Robina, Qld 4226, Australia.

^D Consumer Advisory Group, Gold Coast Hospital and Health Service, Southport, Qld 4215, Australia.

^E Department of Marketing, Griffith Business School, Griffith University, Gold Coast Campus, Qld 4111, Australia.

^F Melbourne School of Health Sciences, The University of Melbourne, Vic 3010, Australia.

^G The Royal Children’s Hospital Melbourne, Parkville, Vic 3052, Australia.

^H School of Population Health, The University of New South Wales, Sydney, NSW 2052, Australia.

^I Institute for Evidence-Based Healthcare, Bond University, Robina, Qld 4226, Australia.

^J NHMRC CRE in Wiser Wound Care, Griffith University, Qld 4222, Australia.

^K Nursing and Midwifery Education and Research Unit, Gold Coast Hospital and Health Service, Southport, Qld 4215, Australia.

^L Faculty of Health, Southern Cross University, Gold Coast, Qld, Australia.

^M School of Nursing and Midwifery, Griffith University, Qld 4222, Australia.

^N Emergency Department, Gold Coast University Hospital, Gold Coast Hospital and Health Service, Southport, Qld 4215, Australia.

^O Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Kings College London, UK.

^P School of Pharmacy and Medical Sciences, Griffith University, Qld 4222, Australia.

^Q School of Pharmacy, The University of Queensland, Qld 4102, Australia.

^* Correspondence to: laura.ryan2@health.qld.gov.au

Public Health Research and Practice 35, PU24021 https://doi.org/10.1071/PU24021

Submitted: 5 September 2024 Accepted: 24 March 2025 Published: 29 May 2025

© 2025 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Sax Institute. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Objectives

The value of engaging health service users and their families (consumers) in research is increasingly being recognised in planning and evaluating health services to meet diverse needs. This project aimed to co-design a strategic consumer involvement framework and implementation plan for a public Australian hospital and health service.

Methods

A co-design approach was used to adopt a framework and develop an implementation plan across five stages: (1) an initial consultation with key stakeholders, (2) a survey of health service staff about involving consumers in research at the health service, (3) three group sessions using Nominal Group Technique with health service consumers and staff that explored barriers and solutions to involving consumers, (4) data synthesis, and (5) a workshop of key stakeholders to develop and refine the implementation plan. Three consumer partners contributed to protocol development, research design, data analysis, and manuscript writing.

Results

Survey and group session data highlighted a need for governance, infrastructure, capacity building, and leadership and culture within the organisation to support the involvement of consumers in research at the health service. These aligned with the South Australian Health and Medical Research Institute (SAHMRI) Framework domains. Implementation strategies were adjusted on the basis of insights from the local context to facilitate adoption within the health service.

Conclusions

By better supporting consumers and researchers to work together in health service research, organisations can enhance the relevance, quality, and impact of their research efforts. This project provides a valuable blueprint for developing a local, contextualised approach to promoting effective consumer–researcher relationships in Australian public health services.

Keywords: consumer and community involvement, consumer engagement, health service research, patient and public involvement, public health.

References

1 National Health and Medical Research Council. Statement on consumer and community involvement in health and medical research. 2016. Available at https://www.nhmrc.gov.au/about-us/publications/statement-consumer-and-community-involvement-health-and-medical-research [cited 7 April 2025].

2 Ocloo J, Garfield S, Franklin BD, Dawson S. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Res Policy Syst 2021; 19(1): 8.
| Crossref | Google Scholar | PubMed |

3 Modigh A, Sampaio F, Moberg L, Fredriksson M. The impact of patient and public involvement in health research versus healthcare: A scoping review of reviews. Health Policy 2021; 125(9): 1208-21.
| Crossref | Google Scholar | PubMed |

4 Anderst A, Conroy K, Fairbrother G, Hallam L, McPhail A, Taylor V. Engaging consumers in health research: A narrative review. Aust Health Rev 2020; 44(5): 806-13.
| Crossref | Google Scholar | PubMed |

5 Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, et al. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expect 2019; 22(4): 785-801.
| Crossref | Google Scholar | PubMed |

6 INVOLVE. Public involvement in research: values and principles framework. Eastleigh: INVOLVE; 2015.

7 National Health and Medical Research Council. Guidelines for Guidelines: Consumer involvement. 2018. Available at https://www.nhmrc.gov.au/guidelinesforguidelines/plan/consumer-involvement [cited 7 April 2025].

8 Carlini J, Muir R, McLaren-Kennedy A, Grealish L. Researcher Perceptions of Involving Consumers in Health Research in Australia: A Qualitative Study. Int J Environ Res Public Health 2023; 20(10): 5758.
| Crossref | Google Scholar | PubMed |

9 Ayton D, Braaf S, Jones A, Teede H, Gardam M, Bergmeier H, Skouteris H. Barriers and enablers to consumer and community involvement in research and healthcare improvement: Perspectives from consumer organisations, health services and researchers in Melbourne, Australia. Health Soc Care Community 2022; 30(4): e1078-e91.
| Crossref | Google Scholar | PubMed |

10 Gunatillake T, Shadbolt C, Gould D, Lam M, Hearst MG, Vleeskens C, et al. Embedding consumer and community involvement within an established research centre: moving from general recommendations to an actionable framework. Res Involv Engagem 2020; 6(1): 64.
| Crossref | Google Scholar | PubMed |

11 Miller CL, Mott K, Cousins M, Miller S, Johnson A, Lawson T, et al. Integrating consumer engagement in health and medical research - an Australian framework. Health Res Policy Syst 2017; 15(1): 9.
| Crossref | Google Scholar | PubMed |

12 Briggs D. Challenges for health systems: Australian perspectives. Public Policy Adm [20] 2017; 6-17.
| Google Scholar |

13 Health Consumers Queensland. Consumer and Community Engagement Framework 2017. Brisbane; 2017. Available at https://www.hcq.org.au/wp-content/uploads/2017/03/HCQ-CCE-Framework-2017.pdf [cited 20 May 2025].

14 Western Australia Health Translation Network. Involving Consumers in Health and Medical Research: A practical handbook for organisations, researchers, consumers and funders. 2021. Available at https://wahtn.org/wp-content/uploads/2021/09/WAHTN-CCI-Handbook_29092021.pdf [cited 7 April 2025].

15 Vargas C, Whelan J, Brimblecombe J, Allender S. Co-creation, co-design, co-production for public health - a perspective on definition and distinctions. Public Health Res Pract 2022; 32(2): 3222211.
| Crossref | Google Scholar | PubMed |

16 Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem 2017; 3: 13.
| Crossref | Google Scholar | PubMed |

17 Australian Bureau of Statistics. Gold Coast: 2021 Census All persons Quickstats. 2021. Available at https://abs.gov.au/census/find-census-data/quickstats/2021/LGA33430 [cited 7 April 2025].

18 Ryan L, Hattingh L, Carlini J, Weir KA, Shapiro M, Baglot N, et al. Consumer involvement in health service research: a cross-sectional survey of staff in an Australian public hospital and health service. Aust Health Rev 2024; 49(1): AH24186.
| Crossref | Google Scholar | PubMed |

19 Ryan L, Wenke R, Carlini J, Weir KA, Shapiro M, Baglot N, et al. Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique. Res Involv Engagem 2024; 10(1): 72-13.
| Crossref | Google Scholar | PubMed |

20 Nichole H, Colin H. Nominal group technique: An effective method for obtaining group consensus: Application of nominal group technique. Int J Nurs Pract 2012; 18: 188-94.
| Crossref | Google Scholar |

21 International Association for Public Participation (IAP2). IAP2’s Public Participation Spectrum 2014. 2015. Available at https://iap2.org.au/wp-content/uploads/2019/07/IAP2_Public_Participation_Spectrum.pdf [cited 20 May 2025].

22 South Australian Health and Medical Research Institute (SAHMRI). A consumer and community engagement framework for the South Australian Health and Medical Research Institute: Final report. 2020. Available at https://sahmri.org.au/assets/20200515_SAHMRI-Consumer-and-Community-Engagement-Framework_Version2.pdf [cited 7 April 2025].

23 Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect 2016; 19(4): 817-27.
| Crossref | Google Scholar | PubMed |

24 McKenzie A, Alpers K, Heyworth J, Phuong C, Hanley B. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers. Res Involv Engagem 2016; 2(1): 16.
| Crossref | Google Scholar | PubMed |

25 Luna Puerta L, Smith HE. The “PPI Hawker”: an innovative method for patient and public involvement (PPI) in health research. Res Involv Engagem 2020; 6: 31.
| Crossref | Google Scholar | PubMed |

26 DeBortoli E, Soyer HP, Milne D, Dissanayaka N, Gartner C, Holt J, et al. Measurable outcomes of consumer engagement in health research: A scoping review. Front Public Health 2022; 10: 994547.
| Crossref | Google Scholar | PubMed |

27 Oliver K, Kothari A, Mays N. The dark side of coproduction: do the costs outweigh the benefits for health research? Health Res Policy Syst 2019; 17(1): 33.
| Crossref | Google Scholar | PubMed |

28 Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, et al. Reaching the hard-to-reach: A systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 2014; 14(1): 42.
| Crossref | Google Scholar | PubMed |

29 Khan N, Keck L, Sykes C, Rowden C, Simister J, Fenlon S, et al. Diversity, community engagement and co-design in research: a rapid review. BMJ Lead 2024;
| Crossref | Google Scholar | PubMed |

30 Ryan L, Ellem K, Le Brocque R, Mitchell C, Langdon L. Navigating Inclusive Research in PhD Studies: A Model for Limited Resource Environments. Int J Qual Methods 2025; 24:.
| Crossref | Google Scholar |

31 Dadich A, Moore L, Eapen V. What does it mean to conduct participatory research with Indigenous peoples? A lexical review. BMC Public Health 2019; 19(1): 1388.
| Crossref | Google Scholar | PubMed |

32 Manikam L, Shah R, Reed K, Santini G, Lakhanpaul M. Using a co-production prioritization exercise involving South Asian children, young people and their families to identify health priorities requiring further research and public awareness. Health Expect 2017; 20(5): 852-61.
| Crossref | Google Scholar | PubMed |

33 Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf 2016; 25(8): 626-32.
| Crossref | Google Scholar | PubMed |

34 Tremblay MC, Bradette-Laplante M, Bérubé D, Brière É, Moisan N, Niquay D, et al. Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative. Res Involv Engagem 2020; 6: 44.
| Crossref | Google Scholar | PubMed |