By Dr Robyn Littlewood, Chief Executive, Health and Wellbeing Queensland
Dr Oliver Canfell, Research Fellow, The University of Queensland and Honorary Appointee, Health and Wellbeing Queensland
How much data do you do?
Oliver (20-something): I use data to make decisions almost every hour of every day. I plan my public transport route to work with multiple GPS options to figure out the fastest way (the Chief Executive would be pleased). At the supermarket at the end of the day, I assess my food budget for the week and admit that I can’t afford lettuce, or many leafy greens, so I alter my plans and choose canned legumes or beans instead.
Rob (40-something): I use data consistently, but I wasn’t quite as aware of it until recently. I go for a run, only to be told that I am going at a slow pace today. My phone has told me I have 4 missed calls and I am about to be late for my first meeting. I receive a reminder from my doctor for my appointment tomorrow, which I use to update my online calendar. I make it to my meeting, try to run a bit faster (only lasting for about 100m) and my doctor was late anyway! This is all through the nudging of my personal data. When did I become so reliant on data?
The era of COVID-19 – and digital transformation
No matter our age, we make the most informed decisions when data is at our fingertips. This is true on a personal and global level. We have seen the extraordinary value of data as a first-line digital defence against COVID-19. Data underpinned digital surveillance for early COVID-19 detection, new visualisation tools that supported nationwide policy decisions and prediction modelling that informed health system planning for each wave. For the average Australian, it may have been reporting symptoms and helping with contact tracing. This rapid, global digital transformation ushered in a new horizon of ‘digital public health’. In its first true test, digital public health helped enormously to manage COVID-19 – a communicable (infectious) disease – but what about digital public health for noncommunicable (chronic) disease? How can a prevention agency – whose remit is good public health policy starting with obesity prevention – shift towards digital public health to improve Queenslanders’ health and wellbeing?
Data is just one piece of the puzzle
As a strong public health agency, Health and Wellbeing Queensland (HWQld) is informed. We are evidence-based and research-driven. Most importantly, we are for everyone, with a strong focus on those who need support the most: the right support, the right intervention, the right policy to the right community at the right time. It is only with high-quality data, underpinned by strong digital infrastructure, that this can be achieved with true precision.
To be clear, decision-making is not – and should certainly not be – a one-piece puzzle, where data is the hero. Data are often our corner pieces, grounding the puzzle and providing much-needed direction. As the middle starts to take shape, there is a healthy – and necessary – blend of other puzzle pieces: community voices and lived experience, equity, innovation, professional experience, strategy and traditional research evidence. The role of data is to complement – not dominate – decision-making. Choosing cabbage instead of lettuce might be innovative for Oliver, but based on experience, he knows a coleslaw can be just as delicious as a Caesar salad.
The best decisions for prevention and the best decisions for Queenslanders are ones that are led by Queenslanders. Decisions need every piece of the puzzle, with data as a cornerstone. In our opinion, there are several reasons that make data critical to the success of prevention:
1. Data is a powerful storytelling tool
The true power of data lies in its ability to tell a story. The ability to process, remember and communicate stories is something that connects every culture throughout history. Data is not just numbers and modelling; it’s yarning, stories and voices, and lived experience. A powerful example of this is the insights HWQld gained into the food security challenges facing First Nations Queenslanders in remote communities at a youth forum. One participant noted: “We’re living in the same state under the same government, with the same produce (essentially), and there’s a big price difference.” Another shared how people had no choice but to drink milk that was delivered to the community still in date, but clearly spoiled. Data-driven storytelling helps us understand community priorities so we can design programs and policies that meet people’s needs.
2. Data enables precision prevention
Precision prevention targets people, regions and communities based on risk and need. Data helps to identify these targeted opportunities by monitoring areas that often fall through the cracks. We can’t improve what we don’t measure. This is not just smarter decision-making, it’s cost-effective. For example, data tells us risk for unhealthy weight in Australian children starts in the early years – the first 2,000 days of life – and in rural and remote areas. We must target this age group and region together through prevention programs to give children the healthiest start in life. HWQld is doing just that by developing an innovative online program to make healthy habits fun for families, whether they live in the city or the country. This free, play-centric web and app-based wellbeing program will support kids and families as they build better lifestyle habits together, using colourful animations to bring healthy eating, movement and sleep tips to life.
Data also tells us families want health professionals to communicate sensitively about weight, without judgment. That’s why we are developing new digital health tools to support clinicians in raising the complex topic of weight with families. These resources, being designed with input from healthcare professionals, parents and caregivers, will be available via Clinicians Hub – a digital platform created by HWQld that empowers clinicians across Queensland to tackle childhood obesity.
3. Data helps determine if our work is making a difference
This is the most important issue of all. We are here to make a difference, and data is key to demonstrating that difference. By using real-world data – data that is collected organically from communities and consumers – we can track our policies and programs to ‘count’ our difference and justify further investment for health and wellbeing. The My health for life program, funded by HWQld, is a healthy lifestyle program aimed at reducing chronic disease, and an example of how we are using data to support a multi-agency collaboration for a state-wide program design. Data has played a critical role in informing the program’s design and delivery and for monitoring and evaluating its impact and results across targeted groups, with more than 14,000 people enrolled to date. We will use the data from this study to inform policy and practice and make an impact by improving the health of Queenslanders through a large-scale chronic disease prevention program.
Balancing purpose with protection
First and foremost, we have an ethical responsibility to all Queenslanders and to our organisation to use health data safely. Ultimately, we have a responsibility to use health data to improve the health and wellbeing of Queenslanders. The capacity to use bigger and better health data will always be measured carefully against what matters most for population health.
There is no stronger role for government-university partnerships than solidifying safe data governance and ethics. This is what governments and academia are experts in, and we are ahead of the curve. In a national-first project, the strengths of State Government (HWQld and Queensland Health) and academia (The University of Queensland) are being brought together to unlock health data securely for research to drive healthcare innovation in Queensland. Balancing purpose (public health benefit) with protection (individual privacy) is our mission, and it is underpinned by trust and transparency.
Digital public health in Queensland? Challenge accepted
The future of digital public health for prevention is near, but we are not without challenges to get there. Ensuring digital equity is critical: data ‘stories’ must be captured whether a community is in Logan or Far North Queensland, and especially where digital infrastructure is scarce. Our digital public health future will depend upon transitioning from snapshot data (surveys, databases) to real-world data, driven by and centred around consumers (mobile health, wearables) that gives insight on social, environmental, behavioural and commercial contributors to health, and not just hospital-centric data.
Where to from here?
We begin with understanding data and the story it is telling – this is our first horizon. We reach our second horizon when we use data responsibly to improve the speed and precision of our decision-making. The third horizon is the future – a learning digital public health system, where all data entered is used constantly to improve policies and practices for future consumers. Getting this right will mean the right support is delivered to the right people and communities at the right time. Prevention will be responsive: real-time data for real-time action. This is the digital vision for HWQld as we work towards a healthier story for Queenslanders. It’s critical and we shouldn’t work any other way.
Oliver (20-something): As a researcher and health professional, I am not afraid to admit that the power of data excites me. I believe unleashing data in the right ways – responsibly and with precision – will mean a healthier future generation of Queenslanders. The more we embrace data and digital as an agent for more efficient, prevention-driven healthcare, the greater our impact on reducing chronic diseases will be.
Rob (40-something): As a leader in the health system, I want to ensure we make a difference in a complicated world. The future is big and complex and different. We need all types of information to help us make an informed decision. Data is critical to help guide us in making the big decisions at a population level, just as it is part of our decision-making when choosing which doctor to use or how best to set reminders for meetings. The more I know about data, the less it scares me. Data alone will not make the decision but will help us to make the most informed ones.