Register      Login
Public Health Research and Practice Public Health Research and Practice Society
The peer-reviewed journal of the Sax Institute
RESEARCH ARTICLE (Open Access)

Consumer and community involvement in preventive health: current insights and considerations for future best practice

Bonnie Brammall A , Helena Teede A , Ashley Ng A B , Rhonda Garad A , Sandy Reeder A B , Angela Jones B and Cheryce Harrison A *
+ Author Affiliations
- Author Affiliations

A Monash Centre for Health Research and Implementation, Monash University in partnership with Monash Health, Melbourne, Victoria, Australia

B Monash Partners Academic Health Science Centre, Melbourne, Victoria, Australia

* Correspondence to: cheryce.harrison@monash.edu

Public Health Research and Practice 34, e3412403 https://doi.org/10.17061/phrp3412403
Published: 4 April 2024

2024 © Brammall et al. This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence, which allows others to redistribute, adapt and share this work non-commercially provided they attribute the work and any adapted version of it is distributed under the same Creative Commons licence terms.

Abstract

Consumer and community involvement (CCI) in preventive research and health initiatives is not only encouraged but is expected within a rapidly evolving landscape across health policy, practice and research. Here, we summarise the fundamental principles of CCI, as well as outline the barriers and current developments in working towards best practices at organisational and systems levels. CCI stands at a critical juncture. Best practice emphasises meaningful partnerships with consumers and communities to deliver impactful research and prevention activities, yet complex challenges and systematic barriers remain. We need further evidence to demonstrate both ‘what’ and ‘how’ CCI should be best implemented in these settings. We present key considerations for researchers, organisations and systems to catalyse the transition of CCI from mere recognition of its importance to pragmatic and optimum implementation and, ultimately, to systemic reform. These include changes to capacity building, funding structures, equitable engagement and transparent evaluation. These must be underpinned by evidence-based approaches, partnership, trust and broad consensus processes to achieve meaningful and impactful CCI in research and healthcare improvement through a lens of inclusivity.

References

Department of Health and Aged Care, Australia. National Preventive Health Strategy 2021–2030. Canberra: Australian Government; 2021 [cited 2024 Feb 23]. Available from: www.health.gov.au/resources/publications/national-preventive-health-strategy-2021-2030?language=en

Frank L, Basch E, Selby JV, Institute P-COR. The PCORI perspective on patient-centered outcomes research. JAMA. 2014;312(15):1513–14. Crossref | PubMed

National Institute for Health and Care Research. PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes. US; NIHR; 2019. [cited 2024 Mar 04]. Available from: www.nihr.ac.uk/documents/ppi-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437

National Institute of Health and Care Excellence. Patient and public involvement policy. UK: NICE; 2024 [cited 2024 Mar 4]. Available from: www.nice.org.uk/about/nice-communities/nice-and-the-public/public-involvement/public-involvement-programme/patient-public-involvement-policy

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 | PubMed

Reeder S, Ayton D, Teede HJ, Skouteris H, Simmons M, Jones A. Opportunities to enhance consumer and community engagement training for researchers and healthcare providers: a qualitative study. BMJ Open. 2023;13(9):e073114. Crossref | PubMed

Israel BA, Schulz AJ, Parker EA, Becker AB. Critical issues in developing and following community-based participatory research principles. Community-based participatory research for health. San Francisco, CA, Jossey-Bass, 2008. pp. 47–62.

Monash Partners. Platforms. Consumer and Community Involvement. Melbourne: Monash Partners; 2024 [cited 2024 Mar 4]. Available from: monashpartners.org.au/disciplines/consumer-and-community/

IAP2 Australasia. IAP2 Public Participation Spectrum. Queensland: IPA2; 2019 [cited 2024 Mar 4]. Available from: iap2.org.au/resources/spectrum/

10  Barone MTU, Klatman E. Meaningful engagement of people living with noncommunicable diseases: challenges and opportunities. J Patient Experience. 2024;11:23743735231224560. Crossref | PubMed

11  Department of Health and Aged Care, Australia. Draft national consumer engagement strategy for health and wellbeing. Canberra: Australian Government; 2023 [cited 2023 Nov 23]. Available from: consultations.health.gov.au/national-preventive-health-taskforce/draft-national-consumer-engagement-strategy-for-he/supporting_documents/Draft%20National%20Consumer%20Engagement%20Strategy%20for%20Health%20%20Wellbeing%20NCESHW.pdf

12  Australian Health Research Alliance. Consumer and community involvement. Western Australia; AHRA; 2023 [cited 2023 Sep 21]. Available from: ahra.org.au/our-work/consumer-and-community-involvement

13  National Health and Medical Research Council. Statement on consumer and community involvement in health and medical research. Consumers Health Forum of Australia. Canberra: NHMRC; 2016 [cited 2024 Mar 2]. Available from: www.nhmrc.gov.au/about-us/publications/statement-consumer-and-community-involvement-health-and-medical-research

14  Department of Health and Aged Care. Principles for consumer involvement in research funded by the Medical Research Future Fund. Canberra: Australian Government; 2023 [cited 2023 Nov 23]. Available from: www.health.gov.au/resources/publications/principles-for-consumer-involvement-in-research-funded-by-the-medical-research-future-fund?language=en

15  Majid U. The dimensions of tokenism in patient and family engagement: a concept analysis of the literature. J Patient Experience. 2020;7(6):1610–20. Crossref | PubMed

16  McKenzie A, Bowden J, Zalcberg JR, Conroy K, Fallon-Ferguson J, Shilpanjuali J et al. A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations. Res Involv Engagem. 2022;8(1):3. Crossref | PubMed

17  Vanderhout S, Nevins P, Nicholls SG, Macarthur C, Brehaut C, Potter BK et al. Patient and public involvement in pragmatic trials: online survey of corresponding authors of published trials. CMAJ Open. 2023;11(5):E826-37. Crossref | PubMed

18  Blackburn S, McLachlan S, Jowett S, Kinghorn P, Gill P, Higginbottom A et al. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study. Res Involv Engagem. 2018;4:16. Crossref | PubMed

19  Richards DP, Cobey KD, Proulx L, Dawson S, de Wit M, Toupin-April K. Identifying potential barriers and solutions to patient partner compensation (payment) in research. Res Involv Engagem. 2022;8(1):7. Crossref | PubMed

20  Australian Institute of Health and Welfare. Australian Burden of Disease Study: impact and causes of illness and death in Australia 2015. Canberra: AIHW; 2019.[cited 2024 Mar 3]. Available from: www.aihw.gov.au/reports/burden-of-disease/burden-disease-study-illness-death-2015/summary