Current or past patients, carers, or community members looking to make an active contribution to health research.
What is a Health Research Consumer ?
In the world of health and medical research, the term ‘health research consumer’ often refers to someone from the general community who contributes to the research process in some way. They may provide advice about what research questions might be important, how to design research in ways that make it easier for research participants, or how to promote research findings to help improve or change healthcare. Sometimes health research consumers have “lived experience” of the healthcare system or a particular health condition but this is not always the case.
Consumers in research are often patients, carers, or community members who help shape projects to ensure they are relevant, ethical, and impactful.
Consumers vs. Participants: What’s the Difference?
It’s easy to confuse a health research consumer with a participant in research, but their roles are quite distinct. In broad terms:
Why Involve Consumers in Research?
Healthcare researchers are increasingly recognising the value of involving consumers in their work. Consumers bring a fresh perspective that can challenge assumptions and ground research in the realities of patient experience. As Di Trickett, Co-chair of Sydney Health Partners’ Consumer Advisory Panel said, “when consumers are truly part of the research team, the results are more meaningful for patients and for the health system as a whole.”
When consumers are truly part of the research team, the results are more meaningful for patients and for the health system as a whole.
Di Trickett, Co-chair Sydney Health Partners’ Consumer Advisory Panel
This involvement helps ensure that research is not only scientifically sound but also meaningful and applicable to the people it aims to help.
What does Involvement Look Like?
Research plays an important role in helping to improve health care services and outcomes for patients and families. It’s really important that health research includes consumers and community members, researchers and the healthcare community to ensure research is addressing issues that matter, and research results are used to make healthcare more effective, safe and affordable.
You don’t need any special skills or qualifications to be a health research consumer; your life experience is what matters most. There are short training courses to help you learn a little about health research and the different ways that consumers can be involved. Here are some examples:
Help decide what to research: Share your healthcare needs and help identify study topics.
Design the project: Collaborate on methods, questionnaires, consent forms, and recruitment strategies.
Help the researchers/investigators: Be involved in steering the research project, designing interview questions or focus group discussions, and assist with data collection or analysis.
Let people know the results: Help write or review plain-language summaries, promote findings, and work with hospitals to use the results.
Provide feedback: Reflect on the research process and suggest improvements and future directions.
Lisa, who was involved in a cancer research project at Westmead Hospital, shared how her involvement made a difference:
“They were really interested in what I had to say and I felt like I made a difference.”
They were really interested in what I had to say and I felt like I made a difference
Lisa, consumer involved in a cancer research project at Westmead Hospital
Getting Started
Becoming a health research consumer is easy, safe, and flexible. You can choose how much time you want to commit, and support is provided, including covering out-of-pocket costs like travel. Whether you join via phone, computer, or in person, your privacy will be protected.
If you’re passionate about improving healthcare, interested in health research and want to help, consider becoming a health research consumer.
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