Designing digital health with community
Mobile devices help us communicate and connect every day. But what if they could also save lives for people in places where access to health services is limited and health worries are high?
Our Australian eHealth Research Centre (AEHRC) is finding out, with innovative, co-designed projects happening right now in urban and remote communities in Australia.
With the life expectancy gap between Indigenous and non-Indigenous people at almost a decade, these projects could make a much-needed contribution to the resilience of these communities.
And their partnership approach is paving the way for future collaborative projects.
Designing research with respect
PhD candidate Andrew Goodman is an Aboriginal researcher at the AEHRC and a co-design advocate.
To Andrew, co-design is the only way to get results for scientists and for the community.
It’s a way of designing research that prioritises the needs of community right from the start – and all the way through.
“Working with community brings with it an extra level of local and cultural accountability, which we welcome. We’re working within protocols, not the other way around,” Andrew said.
Andrew is working on how we can use smartphones and a web-based system (called m-health, which is short for ‘mobile health’) to manage hypertension. Hypertension is a causal factor of Cardiovascular disease (CVD). It’s the leading cause of death globally, and the source of roughly 26 per cent of all deaths in Australia. So far, the project has produced a scoping study, which identifies the importance of building a culturally respectful foundation.
The m-health platform is designed so CVD patients can understand and monitor their own health using a mobile app, while giving their health teams the opportunity to track symptoms remotely.
To understand the issue, the AEHRC partnered with the Queensland Aboriginal and Islander Health Council (QAIHC) and engaged Aboriginal and Torres Strait Islander Community Controlled Health Organisations (ATSICCHO).
“To get the community’s approval to do the research, we first had to align our research agenda alongside ATSICCHO health needs,” Andrew said.
“Being transparent was important to start the project, but it also built trust and relationships for open sharing of information later on.”
Building evidence now for a more liveable future
In the Northern Territory, another example of co-design is working to support the health of people who live remotely in town camps.
A changing climate means more extreme weather. Around Central Australia, this means longer and more frequent heat waves, making it harder for people to have access to cool housing and, sometimes, water.
To address this issue, a co-design project has begun between AEHRC and the Tangentyere Council Aboriginal Corporation in Alice Springs.
The Tangentyere Board approached AEHRC to help document housing conditions in a changing climate. AEHRC’s PhD candidate Georgina Chelberg is working on the study.
Together, they agreed to try a pared down version of Smarter Safer Homes (SSH) technology. The sensors are placed in homes to monitor movement, temperatures and humidity over a 12-month period.
“We’ve trained local Aboriginal Researchers on installing and using the system – they’re doing the on‑the‑groundwork and taking the lead with us as partners,” Georgina said.
Tangentyere Council provides social and community services for 18 Town Camps in Alice Springs. It’s governed by senior Aboriginal men and women from across the Town Camps.
Vanessa Davis, Senior Aboriginal Researcher, has been working with the Tangentyere Council Research Hub since 2002. Vanessa felt the partnership could help with concerns about life in her region will get harder as conditions become harsher.
“Our community members have told us that the houses are very hot in summer and very cold in winter. This project is trying to understand how the houses are performing and what it means for people living in them,” Vanessa said.
“We all recognise that the climate is changing. Climate change is going to hurt our communities and our people, unless we start to think of ways that support families.
“We need to get on the front foot and think about what it means now for how people live. This project is part of that bigger picture story.”
With five houses already geared up with the SSH sensors, and 15 more systems delivered to the community, Georgina reports the data is already reflecting the houses’ unsuitability to the environment.
This doesn’t just mean living in an uncomfortable environment. It’s costing people a small fortune.
“It’s a complex system. For example, without suitable building structures, people may buy cheap heaters which cost a fortune to run,” Georgina said.
“On top of this, power isn’t always available as they need to prepay for electricity, which might not happen for various reasons, and the air-conditioners that are provided are not fit for purpose.”
Two-ways working and learning
The results from this project will help advocate for local solutions.
It will help Tangentyere Council develop a new Community Housing Model that incorporates changes in housing and community designs, and more energy efficient heating and cooling options.
It could not be done without community knowledge and technical knowledge coming together from different places.
“In the past, a lot of research was done that did not help our communities and in some cases was damaging. We are working to change this story,” Vanessa said.
“Projects like this are about bringing meaningful information back to communities to inform change. The partnership is about us all having input in the design of the project.
“This is important because we can all learn from each other. CSIRO brings scientific knowledge and technology to the project, and we bring cultural and community knowledge.
“This is what we call ‘two-ways’ working and learning. It is very important when working with Aboriginal communities that the research team acknowledges Aboriginal cultural ways.
“I have been working in Aboriginal research for a long time – over 20 years – and I have seen that the best projects are those where the community are empowered by the research and have a strong voice in how the research happens.”
Future plans and possibilities
Knowledge of these localised issues can only come from having continued, close communication with the people who are impacted by the studies and their outcomes. In their separate projects, Andrew and Georgina are both striving to keep conversations open and constant.
“We make sure dialogue is always open, so that we’re working in community under trust, and that trust is established before we land in and start doing research,” Andrew said.
“That allows the greatest opportunity for true co-design, so the community has all the information to agree to do something and be able to localise it.
“Then it’s about making sure whatever you’re doing – building capacity, resources or something else that’s new – that something is left in the community.
“We don’t know yet how our studies will finish, but we know we’ve approached it in the best way we could to allow for partnerships to be established. And that’s how we’ll always approach our work within community.”
Although it might take some time to know the health benefits from these projects, Georgina and Andrew, along with supervisor and AEHRC Indigenous Health Research leader Dr. Ray Mahoney, are documenting their experiences as evidence.
The process and protocols themselves could form key principles for the way health research is done in the future. (This is akin to the Our Knowledge, Our Way guidelines for Indigenous-led approaches to land and sea country management; or the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research, which are tools to support research and partnership building with Indigenous communities.)
“In approaching research with Aboriginal and Torres Strait Islander communities, we are documenting very clearly – there are vital steps before you start your business in community,” Andrew said.
The team is positive about the strength of the projects, thanks to the continuing support from people living in community.