Rachel de Sain is one of the women behind Australia’s groundbreaking digital health strategy, which resulted in a 90% uptake of electronic medical records across the country. Here she shares her story and the insights she learned along the way.
The use of the internet and modern technology such as, smartphones, apps, cloud storage, and extensive data analytics has vastly changed the way that humans interact with one another. With the advent of these technologies, and the many benefits they bring, it is of little surprise that governments worldwide are looking to leverage new digital tools to improve the delivery of healthcare.
Australia is one such country that has vastly increased its uptake of digital healthcare. For example, its national patient health record, called ‘My Health Record’, is a consolidated digital summary of Australian residents’ medical information and has more than a 90% participation rate – the highest participation rate in a novel national health record system in the world.
While the national health infrastructure development has been ongoing for more than a decade, in 2016 the Australian government established the Australian Digital Health Agency (ADHA) to accelerate the delivery and realization of the benefits of digital healthcare and to develop and implement a national digital health strategy.
Blue Latitude Health spoke with Rachel de Sain, an internationally renowned digital strategist, CEO, and founder of Codesain strategic advisory firm, and the former Executive General Manager responsible for innovation, design, and development at the ADHA. She reveals what she learned while overseeing the creation of Australia’s Digital Health Strategy, 2018–2022 and how she improved several digital health products and services, which have been built into the national infrastructure – including ‘My Health Record’.
So, how did you get into digital health advising?
RACHEL: I left New Zealand and arrived in London in 1998, where I started developing websites and then moved onto interactive TV and mobile. I noticed how this digital revolution was creating change, not just within businesses or personal communications, but more broadly how society was changing.
Unfortunately, I then got quite sick and just trying to interact with the health system I thought ‘this is ridiculous, how come we’re not using any of this technology to change how we think about healthcare?’ That planted a seed for me.
Many years later, I moved to Australia and worked in a range of roles and projects delivering digital transformation. In 2016, I started working for the ADHA as an executive running the strategy and innovation for digital health. Last year, I decided to leave the government and return to independent advisory work, which I enjoy.
How do you describe digital healthcare?
RDS: I hope that it isn’t always called digital healthcare; it’s just healthcare in the future. Organizations used to have a mobile department or a digital marketing department, but companies now just have marketing departments and social and digital are a component of that.
In terms of what digital healthcare means, it is still a bit varied, but a good definition would be the one the US Food and Drug Administration uses which focuses on the way – using technology to achieve an outcome, like reducing inefficiencies, improving access, reducing cost, increasing quality and making sure medicine is more personalized for patients.
Why has digitalizing healthcare been so important for the Australian government?
RDS: We’re such a huge country and I think that played a factor in driving us to rethink how we deliver healthcare to ensure someone in the Outback has the same services and access as someone in a state capital. The Northern Territory, for instance, was one of the first to start using electronic health records. Australia was also quite advanced in terms of telehealth and online mental health solutions and considered real pioneers in that space.
How did you define Australia’s digital health strategy?
RDS: Strategy is about creating a map of where you want to be and how you want to get there. It needs to reflect the views of the people.
My team at the ADHA took co-design as a key methodology for how we wanted to write the strategy. We spent a lot of time engaging with loads of different people – start-ups, big industry, small industry, patients, carers, clinicians, all sorts of people – to ask what do you think the future healthcare system should look like? What role should digital play? How can we work together and collaborate to change policy and regulation? What needs to change? And what are the priorities to help us get there? Then, we could focus on where we spent the money and how we supported the various players to make that happen.
Does every country need a digital health strategy?
RDS: Every country needs a healthcare strategy that understands what role digital can play in helping it to achieve its goals. It starts with the patients but needs providers, industry and government to work together to be successful.
We need governments to lead and set the regulatory framework for identity, authentication and the privacy laws, not just specifically for healthcare but for everything. In healthcare, this has to happen in partnership with patients and providers, because otherwise, you’re going to create something that doesn’t fit in with the broader experience of how a patient interacts with the government.
A healthcare journey may need someone to interact with many touchpoints beyond the healthcare system, within government and industry. For example, pregnancy may require not only services from the healthcare system but also a connection to the organizations that manage maternity leave and tax credits. Ensuring that a system that shares identity and authentication principles is interoperable across government silos, not just across healthcare, is imperative for a connected ecosystem of services.
What are your thoughts on going beyond that to thinking globally or regionally?
RDS: The world is getting smaller. A lot of the big companies, whether it’s life sciences or your electronic medical record groups, are international. Having interoperability between systems and having a forum for governments or industry to share thinking and discuss common goals is very important.
How can digital health empower the patient?
RDS: I think it’s a double-edged sword. At the moment, a lot of people just think about wearables when they talk about digital health, but research is coming out now that shows many of these tools don’t help users.
We’re still learning exactly how digital can help, but we know it’s important to give patients access to information, to provide a sense of community, and to give them tools to help them adhere to treatment – all this can be improved or, in some cases achieved, through digital technology.
However, you have to consider that if a doctor hands you a box that’s a medical device, you’re likely to treat it quite differently from your mobile phone, which you chuck in your gym bag, drop, pour beer on, etc.
For example, if I download an asthma app onto my phone and then I drop my phone and something goes a bit haywire causing the phone to gather incorrect data, whose fault is that?
We have to understand how we can work around these different cases. We also need to work out what we can do to ensure these amazing technologies work with medicines and novel treatment methods to create better outcomes for patients.
Is any new technology excelling in the healthcare space?
RDS: I’m personally really interested in mental health, because we don’t understand a lot of the factors that trigger and impact someone’s mental health. There’s some great work being done with algorithms relating to voice recognition, which pick up when somebody may be shifting into an anxious or depressive state. The technology can then signal that the patient may need an intervention, be it through counseling or a change to their medicine.
If we think more broadly, using some of these digital tools to support better adherence is an enormous opportunity. For instance, my husband has a pacemaker and takes four or five drugs. The amount of times that he says, “do you remember if I took my pills this morning?” is very frustrating.
Making it easier to get repeat prescriptions and minimizing that barrier to adherence will be important. If life science companies could work with digital health start-ups, they could deliver something that supports the patients’ needs and could be personalized to their particular lifestyle.
We’ve talked about the triple aim of health to reduce cost, improve patient outcomes and improve population health. This has evolved to the quadruple aim – adding in the provision of better tools for the health workforce. Now, I think it’s time we add a fifth goal, to create economic growth opportunities for industry and indeed nations too.
By Jack Reinsfield