Principles of involvement
This page outlines a set of widely-applicable principles that provide a framework for good practice for consumer involvement
Key Principles for Involvement
Successful consumer involvement often depends on the nature of the interactions between those involved. The quality of the involvement activities you undertake will depend upon:
- The quality and totality of the information to be shared
- The quality of communication
- The opportunity to meaningfully contribute
- Having contributions recognised and acted upon
It is important to consider the principles that best enhance the potential impact of consumer involvement. The following principles have been drawn from the literature and from organisations across Australia that actively and successfully involve consumers.
Involve early - The earlier you start, the better those you involve will understand and feel part of the project. However, do not be put off if you did not start your involvement activities at the beginning – it’s never too late.
Recognise that one size doesn’t fit all - Work together to agree roles and the type and level of involvement that will suit both you and those you involve. Clarify and agree with those you involve, what you hope to achieve.
Strive towards diversity - Involve a diverse range of backgrounds and perspectives from within the target population that the research is hoping to benefit. This will increase the chance that your research will lead to treatments/services which reflect consumer and community needs.
Provide support - Ensure those you involve have access to appropriate resources, induction or training, their out-of-pocket expenses are covered and where appropriate, reasonable payment is offered for their time.
Develop skills - Ensure you have the necessary skills and training to effectively involve consumers and the community.
Manage expectations - Work with those you involve to decide the best way to ensure expectations are met so that the risk of frustration and disengagement is minimised. Describe any constraints that operate (e.g. researchers’ area of expertise/funding may restrict what they can research).
Foster mutual respect - Give a ‘voice’ to, and respect different ideas and perspectives. Acknowledge the contribution of those involved.
Strive for reciprocity - Work to ensure that all those that are involved in a project feel that they get something back from involvement, such as the satisfaction that they have made a positive impact.
Be fair and transparent - Provide opportunities for recruitment and contribution in a fair and transparent manner.
Provide feedback - Share information willingly and in language that everyone understands. For example, evidence of how your study benefited from their input is hugely rewarding for those involved.
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 attitudes of professionals
- 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
- Payne, JM et al. Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation. Health Research Policy and Systems (2011), 9:18
- Tong, A et al. Research Priorities in CKD: Report of a National Workshop Conducted in Australia. American Journal of Kidney Diseases, (2015), 66:2, pp. 212-222.
- Bower, C et al. Collaborating with consumers: the key to achieving statutory notification for birth defects and cerebral palsy in Western Australia, Journal of Registry Management (2013); 40:1
- Jones, H.M et al. Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia. Health Research Policy and Systems (2013), 11:26
- Sydney Health Partners: Engaging Consumers in Health Research: Report of Initial Consultations (2017)
- Telford, et al. What Does It Mean to Involve Consumers Successfully in NHS Research? A Consensus Study. Health Expectations3 (2004): 209–220
- Baines, R et al. Optimizing Patient and Public Involvement (PPI): Identifying Its ‘essential’ and ‘desirable’ Principles Using a Systematic Review and Modified Delphi Methodology. Health Expectations1 (2018): 327–335.
- Supple, DR et al. From tokenism to meaningful engagement: best practices in patient involvement in an EU project. Res Involvem Engagem. (2015);1(1):5.
- Public involvement in research: values and principles framework. NIHR INVOLVE (2016)