Health and medical research has never been more important in Australia. Whether that be research into COVID-19, research that uncovers life-saving treatments for common chronic conditions or studies shedding light on serious rare diseases. Most Australians say they would be willing to participate in health and medical research, but very few are ever invited. The Join Us Research Register helps researchers find Australians willing to participate in studies.

Join Us advocates and researchers recorded a webinar on 12 Oct 2021 to talk more about the work they do. The following is a list of questions from webinar participants. 

view the webinar 

Questions and answers

Q: What is the premise of the online woolies research? 

Ashleigh Hart:  The premise of the online grocery shopping research is that additional nutritional information about the products that are available may influence / support consumers to choose food products shopping online.

Q:  Hi Ashleigh, Can you explain more about what products are purchased online ? I assume they are set products to reduce Blood Pressure? Are there set dietary products?

Ashleigh Hart:  Participants choose their own food products and the web browser extension may provide interpretive nutritional information about the products selected to purchase.

Q:  Is anyone doing research on paeaneuroplastic syndrome?

Angela Hehir: The Join Us Register does not conduct its own research, but will make it easier for researchers and participants to connect. We are encouraging as many people as possible to register with Join Us, so that we can support research into as many conditions – including rare conditions – as possible. Research into these conditions is often made more challenging because of the difficulty in finding the right people.

Q: Does JoinUs have a LinkedIn page?

Angela Hehir: We do not currently have a LinkedIn page but are accessible on Facebook & Twitter: @Joinusresearchregister.

Ashleigh Hart: Here is the link to the Join Us Register:

Q: The Sunshine Coast Hospital and Health Service has a consumer group that comments on research proposals of staff from the concept stage through, supporting funding applications, reaching out to / recruiting participants and commenting on tools and findings.

Angela Hehir: That is great to hear. Happy to hear more if you have a chance to contact me:

Q: Women with disability are also poorly represented. Women of all ages and abilities are left out

Angela Hehir: This is very true – thanks for your comment. One of the goals of the register is to increase representation in research. As Dr Clare Arnott indicated, women have been left out of much research and this would be more pronounced among women with disabilities or co-morbidities. Interestingly more than 60% of the people who have signed up to the register are women. So women are interested in participating, but we also need to ensure the studies are relevant and that women are not excluded.

And it’s possible to choose a research project that interests you and benefits you

Angela Hehir: When participants are sent information about a study for which they may be eligible, they are under no obligation to participate if the study does not appeal to them or if it is not the right time to get involved. Participants will receive up to four offers each year.

Q: Hi Warwick here, I have a problem with the term consumer when it comes to health care. I don’t want to consume what an expert wants to or is prepared to provide me. I have a number of chronic and incurable issues that all require active management on my part. What I want are health care providers that will partner with me, to see me as human, so I can stay as healthy as I can. Calling me a consumer perpetuates the separation between the professional and the person seeking be as well as they can be.

Angela Hehir: Hi Warwick. Thanks for raising this. It is an important point and one that highlights the importance of equal partnerships in healthcare, and in research. Providing a platform for researchers and community members to come together is important to us and we will need to make sure that our language reflects this. Happy to discuss this further with you

Q: How does Join Us support consumers being part of the design of research projects OR support consumers initiating research

Angela Hehir: Hi Margo - great question and we are keen to make sure this is built into the register. We will be working toward this as a priority. Happy to discuss with you!

Q: Angela,  As I have End Stage Renal Failure I assume I am not the ideal candidate for research

Angela Hehir: Patients’ lived experience is of vital importance to many researchers. There are many types of studies designed to gather people’s perspectives to guide programs and interventions. So please do not think that your experience would not be valued!

Q:  Can the register be accessed by employers and insurance companies?

Angela Hehir: The register has been set up with very strict privacy and data security protocols. Data collected is managed by nominated George Institute and UNSW staff and is not made available to third parties such as employers and insurance companies. You can read the Privacy Policy here: Privacy-policy.pdf (

Thank you Angela for this register. Is Clive Berghofer from Brisbane, among your research organisations? I have done a study from them. 

Angela Hehir: QIMR Berghofer are one of our Partner Organisations. I am pleased you have had the opportunity to participate in a study with them and hope it was of value to you. I would be interested to hear what you thought about participating in a study.