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The Join Us research register provides a single point of access for all patients and all types of research studies.
Medical research relies on human participants to advance knowledge and improve health outcomes. Many patients want to take part in research relevant to them but find it hard to engage with the research sector. Increasing community involvement in medical research is a key goal for the government’s “National One Stop Shop” for clinical trials.
Research registers are a proven way of connecting patients and researchers, but these registers typically address specific diseases, focus on people attending metropolitan centres of excellence, and can be difficult for patients to navigate. There are also significant practical challenges with securing ongoing support for multiple disease-specific platforms.
Disease-agnostic research registers offer patients of all types a single point of access to research. Join Us (www.joinus.org.au) is a disease agnostic not-for-profit research register developed for Australians. Join Us has been co-designed by more than 50 parties across the research sector including academia, community and government. During the development phase, Join Us has enrolled more than 7500 participants who have received 31 000 invitations to some 100 different research studies.
Join Us is now ready to scale with the goals of increasing enrolment to 100 000 participants, and supporting 100 research studies, in 2025. We need your help to get your patients and your research colleagues to use Join Us.
How it works
Join Us is open to all adults living in Australia. Anyone potentially interested in taking part in a research study can register online to receive email prompts about studies that might be relevant to them. It takes about 5 minutes to sign up:
- Go to the Join Us website (www.joinus.org.au)
- Read about the register
- Consent to participate
- Leave your contact details
- Provide brief information about your health.
Join Us is also open to all Australian researchers. Any Australian researcher recruiting for a study can ask for support from Join Us by completing an online application form. The request form requires evidence of ethics committee approval and details about the inclusion and exclusion criteria. The Join Us team uses this information to match register participants with researchers.
Join Us participants that match the study criteria (according to the health information provided at registration) are sent standard format invitation emails about the study by the Join Us team. Join Us participants can read about the study and click on links to get more information about what is involved. If they decide they want to be considered for the study, they use the contact details in the invitation email to get in touch with the research team. There is no obligation to participate in any study and, to maintain participant confidentiality, the study teams are unaware of who has received an invitation.
The legal sponsor for Join Us is The George Institute for Global Health, which is affiliated with UNSW Sydney and operations are led by an independent chair and a management committee drawn from the 50 partner organisations. The project is run on a public good basis and participation is free-of-charge to community. Support to research studies is also currently provided free-of-charge but will transition to a cost-recovery model once participant numbers are sufficiently large. It is anticipated that research studies will eventually be charged a few thousand dollars each for support with participant recruitment. This will still be a lower cost than commercial recruitment registers and could save research teams significant amounts of time and grant funding.
Data security and participant confidentiality was the number one issue identified by community and researchers during project design. To this end, contact details are held only by Join Us and are never shared with third-party research groups. In addition, contact details and health data are stored in separate and secure databases and the health data are held in a de-identified format. Join Us participants consent to being approached up to 8 times each year about research studies for which they are potentially eligible but can change this number to suit their preferences using the participant portal.
Join Us shows huge potential for connecting community to researchers and making Australia a better place to do medical research. While Join Us has not yet achieved the scale required to deliver most participants to most research studies, the opportunity is clear. Join Us can play a central role in state and federal government programs seeking to empower community engagement with the medical research sector, enhance Australia’s clinical research capacity and improve the health and wellbeing of the nation.
Helen Monaghan is Head of Clinical Trial Partnerships and Operations Lead of Join Us at The George Institute. She is also an Adjunct Senior Lecturer and Project Manager in the Implementation to Impact team at UNSW Sydney.
Jessica Smith is Project Manager of the Join Us research register at The George Institute. She holds a Master of Public Health and has 8 years of experience working in health-related project roles. She has worked across government and non-profit organisations and has a keen professional interest in health research equity and health literacy.
Bruce Neal is Executive Director of The George Institute in Australia and Professor of Medicine at UNSW Sydney
The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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