Australia has world-class health and medical researchers who have been responsible for many life-changing breakthroughs that have benefitted the Australian and international community.
But the ability to conduct this research in Australia depends on bringing the community and researchers together. It’s not that people don’t want to participate in research – in fact there’s data to show that if you asked the community if they’d be willing to be involved in research that was relevant to them, about two-thirds would say yes, but in practice very few are ever invited.
Recruiting participants for studies can take months and sometimes hundreds of thousands of dollars to do. Many studies fall over at this hurdle because they just don’t get enough people to participate. Making research participation more accessible to the community will strengthen Australia’s research effort.
That’s why The George Institute in partnership with the University of New South Wales has launched a register called Join Us, which aims to recruit a million Australians who agree to be contacted if there is a study that might be appropriate for them.
The consumer voice is key to the success of this new initiative and representatives from the Consumers Health Forum have been with us on this journey from the beginning, providing input and advice, and asking the important questions so we could address any concerns.
We are delighted to say that CHF is now part of a group of over 25 consumer, research, and health and advocacy organisations who have agreed to come on board as Join Us collaborators to help us steer the direction of the register and of course, also help us to recruit more participants.
The success of Join Us will depend on it being able to support research that addresses many different aspects of health across a broad range of the Australian community. It requires representation from every state and territory, equal enrolment of women and men, and the participation of older and younger adults across all socio-economic levels in both urban and rural areas. There will also need to be significant representation of Aboriginal and Torres Strait Islander people as well as other Culturally and Linguistically Diverse groups.
The digital technology underpinning Join Us uses robust and secure systems…
Recognising the importance of working closely with members of these communities in order to communicate effectively and manage any concerns, we have convened an Aboriginal and Torres Strait Islander advisory group and are working with a range of organisations to help us reach and engage consumers from culturally and linguistically diverse backgrounds.
In our early discussions with our CHF representatives, they highlighted that concerns about data security could represent a potential barrier to signing up to the Join Us register. We have listened to these concerns and have provided registration options to cater for the fears some consumers may have about data sharing.
The digital technology underpinning Join Us uses robust and secure systems that have been developed to enable large scale management, secure storage and analysis of sensitive health data.
Participants provide their name age, sex and contact details, and are asked to fill in a brief questionnaire for some more information about themselves and their health. Immediately after that, those bits of information are separated – personal identifiers stay in one database and are assigned a unique reference number, and the health information is held in another secure database with that unique inumber. Where consent has been given, participant’s health related records will also be used to help match them to studies for which they are eligible.
Another way in which the consumer voice will be central to this initiative is in the telling of personal stories about experiences of participation in research and the benefits that it can bring. One of our CHF representatives, Joanne Baumgartner is currently featured on the Join Us website, telling her story about being involved in a research project.
Ultimately, the goal of this project is to achieve better health and wellbeing for all Australians…
As we grow the number of participants in the register and start recruiting for more research projects, we plan to regularly share the experiences of Join Us participants in different projects to help people understand the different types of studies they might want to become involved in.
So now we are embarking on a sustained recruitment drive. A range of strategies will be used to drive consumer and researcher participation in the register including a public awareness campaign, collaborations with our new partners and engagement of local ambassadors.
Ultimately, the goal of this project is to achieve better health and wellbeing for all Australians by more rapidly advancing the understanding of health and medicine and making these advances available to all community members.
To register or find out more, visit www.joinus.org.au.
About the author
Angela Hehir has a background in research and health promotion and many years’ experience working to improve the health and wellbeing of vulnerable populations. Angela’s goal for ‘Join Us’ is to establish a resource that brings together researchers and participants that represent the breadth of Australia’s diverse population.