Our Consumers
What is consumer involvement and how does it differ to participating in a study?
Consumer involvement is where patients, carers, or the public actively work with researchers to help shape decisions about health research. Involvement can include researchers consulting, collaborating or partnering with patients, carers, or the public at any stage of the research cycle.
Consumer involvement is not the same as participating in research. Participation is where patients or healthy volunteers take part in a research study as ‘subjects’ (for example, a clinical trial). Subjects are necessary to allow researchers to progress their research. The below figure explains the differences between consumer involvement and participation.
The IMH Consumer Advisory Registry
Established in 2020, the Institute for Musculoskeletal Health Consumer Advisor Registry has greatly improved how we involve consumers in our research. This Registry includes over 30 people who volunteer their time to help design and conduct studies at the IMH. The Registry connects researchers with knowledgeable and enthusiastic consumers. Ensuring consumer feedback is a key part of our research from the start improves the relevance, quality and outcomes of our research.
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Below are some testimonials from consumers in our registry.
“We were very fortunate to have Karen (consumer) help design our NUDG-ED study, a large clinical trial aiming to reduce low-value care for patients with low back pain in Sydney emergency departments. Karen was instrumental in helping us understand how our interventions would likely be received by patients and led to us making significant changes to improve the acceptance and effectiveness of the interventions. Having a fresh perspective also helped us identify potential unintended consequences of the interventions that we then built into our data collection processes.”
Gemma Altinger (PhD Candidate), on behalf of the NUDG-ED team
Why did you get involved as a consumer and what did you get out of it?
“I became involved in research as I transitioned to retirement. As a registered nurse, being involved with this group was a meaningful way for me to stay engaged with the healthcare community, contribute to research and also be an advocate for patients.
Why would you suggest that others get involved?
“Being a consumer involved in research can help you shape future research, and act as an advocate for patients, ensuring the voice of the patient is heard in research. It can also help your own professional development, allow you to stay up to date with new research, and allow you to give back to the community who helped with your own healthcare journey.”
How to get involved with the Registry?
“If you are interested in finding out more about the Registry and becoming involved, please fill in your contact details below and a member of the IMH Consumer Advisory Registry will get in contact with you over the coming weeks.”
Karen Tambree (consumer)
Do you:
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Experience bone, joint or muscle pain?
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Have an interest in healthy ageing, disability and physical activity?
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Want to be involved in shaping research in the above areas?
Joining our Consumer Advisory Registry might be for you!
Want to find out more about consumer involvement in health research?
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This Consumer Involvement Pack provides more detail and answers some important Frequently Asked Questions [link to pdf https://involvementtoolkit.clinicaltrialsalliance.org.au/media/z2odqoly/cip-final.pdf ].
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This free online video course provides more information about the what, why and how of consumer involvement [link to https://www.retprogram.org/training/consumer-and-community-involvement-in-health-research]
Important information about principles
IMH values the input consumers provide on our research. We endorse the following principles that guide how researchers and consumers interact. If you feel like you are not being treated according to these principles, please reach out to us.
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Values
Respect: Researchers and the public will show mutual respect for each other’s roles and perspectives, treating them as equals
Support: Researchers will support everyone by providing access to resources, using plain English language, offering training and support
Transparency: Researchers will be crystal clear and open about all elements of research projects and processes
Responsiveness: Researchers and the public will respond to all requests for clarifications and provide feedback on comments and alterations
Fairness of opportunity: Researchers will provide opportunities for recruitment and contribution in a fair manner
Accountability: Everyone has a duty to take responsibility for their tasks and roles