Consumers and community members bring expertise about their health condition and experience of the health system that improves the quality, relevance and direction of health research. They help us understand the priorities of their community and where research is most needed. Partnering with consumers and community members builds trust and public confidence in research and assists with the translation of research findings into healthcare.
Involving consumers at the outset provides an opportunity to think about the project from a different perspective and results in a more relevant research question. Consumer input can lead to more effective recruitment strategies and improved data collection processes.
Increasingly, many funding bodies, government organisations and research institutions require consumer and community involvement throughout research. There is evidence that consumer and community involvement improves the quality, outcomes, relevance and impact of research. Strengthening consumer involvement ensures Australian research aligns with international best practice1,2.
Hear why Professor Helena Teede AM, prioritises consumer and community involvement in her work.
There are many guidelines and statements which emphasise different, but similar, values and principles which underpin consumer and community involvement. Here we highlight the advice of the Medical Research Future Fund Consumer Reference Panel (2023):
The panel recommends that consumers should be involved:
- 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.
Please see additional resources that highlight the values and principles that underpin good practice in consumer and community involvement.
There are many things to consider when planning for consumer and community involvement. Here is a summary of the key areas:
- Ensure there is clarity about the purpose of involving consumers in the research or project.
- Plan to monitor and evaluate outcomes and experiences from multiple perspectives.
- Plan for early and sustained involvement. Offer flexible methods of involvement to attract a diverse range of consumers and to provide inclusive opportunities.
- Plan for who you want to involve and seek diverse involvement.
- Commit to building relationships and trust. Consider that you might meet people where they are rather than expecting everyone to come to you.
- Plan how you will work together. Consider what role consumers will play and what level of engagement they will have. See Engagement Frameworks resources for more information.
- Appoint a person to be a dedicated contact for consumers.
- Develop communication plans.
- Consider the support and training consumers might need. Prepare induction and orientation resources.
- Prepare budgets and understand organisational processes for consumer payment, reimbursement and recognition. See Payment, Reimbursement and Recognition for additional resources.