Principles of involvement
This page outlines a set of key principles for good practice in consumer involvement
Key Principles for Involvement
It is important to consider the principles that best enhance the potential impact of consumer involvement. The following are the principles outlined by the MRFF Consumer Reference Panel regarding consumer involvement in MRFF-funded research.
To achieve the best quality, outcomes and value for money in MRFF-funded research, consumers should be involved:
- In every type of research, including basic science, public health, preventive health, translation, and clinical research.
- At all stages of research, from defining the need/priority of a research question, refining the research question and research design, through to conduct of the research, and sharing and translation of results.
- In partnership with researchers, with consumers respected and recognised for the valuable and complementary knowledge, expertise and perspectives they bring to the research.
- Effectively, with sufficient time, resources and depth of relationships to enable consumers to understand and actively engage with and contribute to the research.
- Sensitively and safely, through research teams with strong and broad capacity and capabilities in consumer involvement, appropriate training, and a supportive environment for consumers, and clearly defined and agreed roles.
- With broad diversity and equity, with the goal of increasing involvement of priority populations through culturally safe and appropriate engagement.
The form and level of consumer involvement should be appropriate to the specific project and to that cohort of consumers.
It is also important to recognise the factors that may limit the effectiveness of your involvement plans or hinder any future plans. These include:
- The values of the organisation
- Failure to identify those best suited to a particular involvement activity
- Uncertainty regarding the aims of the activity or what is required
- Power relationships, which can mean that a person’s or organisation’s priorities dominate
- A lack of clarity regarding the terms and conditions of involvement
- A lack of organisational resources to support effective involvement
Further reading:
- Australian Government Department of Health and Aged Care. (2023). Principles for consumer involvement in research funded by the Medical Research Future Fund. Australian Government Department of Health and Aged Care. https://www.health.gov.au/resources/publications/principles-for-consumer-involvement-in-research-funded-by-the-medical-research-future-fund?language=en
- Ayton, D., et al. (2022). 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 Services Research, 57(4), 823-833. https://onlinelibrary.wiley.com/doi/10.1111/hsc.13515
- Baines, R., et al. (2018). Optimizing Patient and Public Involvement (PPI): Identifying Its ‘essential’ and ‘desirable’ Principles Using a Systematic Review and Modified Delphi Methodology. Health Expectations 21(2), 327–335. 1111/hex.12618
- Bower, C., et al. (2013). Collaborating with consumers: the key to achieving statutory notification for birth defects and cerebral palsy in Western Australia, Journal of Registry Management, 40(1), 11-17.
- Gunatillake, T., et al.(2020). Embedding consumer and community involvement within an established research centre: moving from general recommendations to an actionable framework. Research Involvement and Engagement, 6, https://doi.org/10.1186/s40900-020-00241-2
- Jones, H.M., et al. (2013). Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia. Health Research Policy and Systems, 11, 26. Payne, J.M., et al. https://doi.org/10.1186/1478-4505-11-26
- Payne, J.M., et al. (2011). Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation. Health Research Policy and Systems, 9, https://doi.org/10.1186/1478-4505-9-18
- National Institute for Health and Research (NIHR). UK Standards for Public Involvement. UK Standards for Public Involvement - The UK Standards
- Supple, D. R., et al. (2015). From tokenism to meaningful engagement: best practices in patient involvement in an EU project. Research Involvement and Engagement, 1(1), 5. https://doi.org/10.1186/s40900-015-0004-9
- Telford, R., et al. (2004). What Does It Mean to Involve Consumers Successfully in NHS Research? A Consensus Study. Health Expectations, 7(3), 209–220. 1111/j.1369-7625.2004.00278.x
- Todd, A., Nutbeam, D. (2018). Involving consumers in health research: what do consumers say? Public Health Res Pract, 28(2). Sydney Health Partners. Involving consumers in health research: what do consumers say? - June 2018, Volume 28, Issue 2 | PHRP
- Tong, A., et al. (2015). Research Priorities in CKD: Report of a National Workshop Conducted in Australia. American Journal of Kidney Diseases, 66(2), 212-222. https://doi.org/10.1053/j.ajkd.2015.02.341