Conducting research with Aboriginal and Torres Strait Islander communities requires a respectful, ethical, and culturally sensitive approach. This case study provides comprehensive guidance on how to engage with communities effectively, ensuring that research practices honour their unique cultural heritage and lived experiences. Written Resources Steps for Involving Aboriginal and Torres Strait Islander Communities – prepared […]
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.
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.
Approaches to Consumer and Community Involvement
Approaches to consumer and community involvement in health and medical research focus on building respectful, inclusive, and collaborative relationships. Here are some key approaches to consider:
Click through to learn more information and see examples on various approaches to consumer and community involvement
Bridging Science and Community: The Power of Consumer and Community Involvement in Basic Science Research In November 2024, the Western Australia Health Translation Network (WAHTN) CCIProgram hosted a forum to explore the integration of consumer and community involvement in basic science research across Western Australia. The event featured researcher-consumer teams co-presenting on the consumer and […]
Consumers may be employed through a formal contract for their lived experience expertise to actively contribute to research, healthcare improvement or policy development. Some of examples of these roles may include:
Consumer partnership in health and medical research is an approach in which researchers and/or healthcare providers and consumer organisations actively and meaningfully work together to design and conduct research or healthcare improvement projects. Consumer partnerships usually refer to a broad collaboration between researchers and consumer organisations or groups and may involve one or more consumer […]
A co-researcher approach is when people with lived experience actively collaborate as an equal member of the research team and are embedded in project processes alongside academic researchers. Using a co-researcher approach, consumers may undertake specific training to build their capacity to engage and conduct research activities. Consumer roles as a ‘co-researcher’ could involve, for […]
Consumer advocacy is an approach where individuals with lived experience work to champion the rights, needs and priorities of the broader patient and carer community across healthcare, research and policy development. By doing so, consumer advocates can ensure that the lived experience perspective is embedded in decisions being made. Consumer advocates take on roles like […]
Consultation is a structured approach that focuses on gathering insights, feedback or advice on specific research, healthcare improvement or project activities, policies, strategies or priorities. The consultation may occur as a once off, ad hoc, over a short period of time (weeks to months), or for a specific purpose/outcome. There are various methods that consultation […]
Consensus building is when consumers are engaged in a deliberative, democratic process to reach a shared agreement on key issues using a variety of participatory approaches. Consensus building approaches encourages open discussions with diverse perspectives from all stakeholders including those with lived experience, clinicians and researchers and uses structured methods to guide agreements that balance […]
A consumer advisory panel is a high-level group made up of consumers and or community representatives. Established by health, research or healthcare organisations, consumer advisory panels can provide consumer perspectives on relevant issues across a range of research projects, provide input into the design of research and grant proposals, review policies, advocate for people with […]
Consumers may be involved as members of a larger project or steering committee to provide broad oversight and input from a lived experience perspective. This involvement may be for a government, professional body or organisation level committee, a board or board sub-committee or a research project. All committees should have a Terms of Reference that […]
“Eye-opening” is how I would describe my experience being part of the Emergency Care consumer advisory panel. Not only was I able to share my experience and influence change, I got a glimpse into what happens behind the scenes in research…
Planning to Involve Consumer and Community Members
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 for who you want to involve and seek diverse involvement.
- Plan for early and sustained involvement.
- Commit to building relationships and trust. Consider that you might meet people in their setting.
- Offer flexible methods of involvement to attract a diverse range of consumers and to provide inclusive opportunities.
- 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.
