Digital transformation of healthcare is supposed to be the big positive outcome from the COVID-19 pandemic. While telehealth was clearly a valuable response, use of a video or telephone call between doctor and patient is at the lower end of the scale of digital technology.

Yet, over in the commercial space, thanks to our smart phones, tablets and (even) watches, the quality, reliability and accessibility of our own personal digital health data has never been so outstanding.

Why do governments face systemic problems with digital health data compared to the global tech providers?

What is digital health data?

Historically, ‘health data’ was limited in nature to the information manually collected during private interactions with medical professionals. Its use was confined to the institution’s four walls, meaning that access to data by another individual or institution was complicated.

Technology, of course, has allowed us to easily collect, store and share data. Digital health apps capture data in real time in innovative ways: think AI, robotics, nanotech and ‘always on’ devices.

And it's not just about the data collected from an individual: there is the mass aggregation of data about countless people, its analysis by AI to find trends we could never see, and the provisioning of health services to an individual based on the comparison of their data with the AI’s learnings.

Digital health data = better healthcare

The benefits of a rich, readily available pool of digital health data are easily seen:

1. Knowledge becomes accessible to institutions that may not otherwise have the capital or resources to collect the data itself – think small rural hospitals with doctors who have to be a ‘jack or jill of all medical trades’;
2. The quality of services and outcomes achieved by healthcare services improves as data is shared. This is critical, given medical error is the third-leading cause of hospital deaths in Australia. 
3. End-user platforms, like Apple Heath, which allow users to monitor their own health data can reduce resource burdens on institutions by preventing unnecessary medical visits and ultimately, redirect resources to ensure a more efficient provision of services. 

While the opportunities facilitated by digital health are promising, the Health Informatics Society Australia cautioned that ‘digital health is not just how we do health’, but ‘what we do…with regard to health’.

Governments and data: a socially distant relationship

A government’s collection and use of its citizens' data and privacy concerns are seemingly always at loggerheads. A criticism of the My Health Record is that, while the data was being harvested from patients, "the My Health Record system appears more suited to supply data for government agencies and researchers than it is suited to healthcare" .

Enter the COVIDSafe App; the sunscreen for COVID-19.

In theory, the App was the Government’s golden ticket to conquering COVID-19. The App, once downloaded to the smart phone, would run in the background, silently identifying whether users were within close contact of a positive case. Clusters would seamlessly be identified, individuals would be notified, and community spreading would be avoided.

However, the App received considerable community backlash over its clunky technology and scepticism about its effectiveness when measured against the mildly irritable admin of running it every time the user leaves the house. The results? Data recorded in August 2020 found a locked iPhone only detected another locked iPhone at most 50% of the time.

Even more problematic was the general scepticism about how the Government uses the data, fuelled by lack of transparency about that use. For example, the government has refused to release information in response to FOI requests about how many of the initial 7 million users continue to use the App. Concerningly, it has been alleged that one or more Australian intelligence agencies have ‘incidentally’ collected data relating to the App, albeit within the scope of the Privacy Act.

But I use my Apple Watch to record the same data…?

Apple Health allows users to monitor their own health through digital health data and connectivity. Through partnership apps, users can monitor anything from their daily step counter to blood oxygen levels to the exact time it takes to run a kilometre on a given route.

Big, foreign corporations collecting this data have the capacity to exploit your information by selling it to other big, foreign corporations for profit.

Yet, we voluntarily supply this information. Over and over again.

This begs the question,

why are we more inclined to give our data to private tech companies (and global providers at that) than our very own government?

It all comes down to trust…

Our data relationship with Government is built around compliance and consequences. Governments collect data to ensure we are not overclaiming social security or no underpaying taxes. We give the information grudgingly and we don’t see much return value, at least to us at an individual level.

Our relationship with a tech provider is more transactional. We understand that the corporation’s utilisation of the data is to make a profit – unlike Government’s use of data being for a public benefit. But what’s important is that the individual transactional character of us giving over the data – we get something in return because the corporation provides a service or product that is more curated, better quality, more refined and integrated. Of course, as the current furore over adtech shows, some tech providers are more open and honest about this transactional relationship than others. Recall, if it wasn’t for the technological advances of Apple Health, we would not be able to access and monitor our own health data. This connectivity not only benefits us, but medical institutions, too.

Also government, empowered to make decisions affecting our lives across a broad front, has the capacity to use that information in potentially punitive ways. Therefore, we instinctively fear a government, which collects our data, particularly in the context of a significant lack of transparency over how it is used.

One final thought

While the COVID-19 outbreak provided the Government with the opportunity to better use digital health data connectivity to conquer the virus, the pandemic experience does not seem to have conquered our deep-rooted, systemic fear of government exploiting our data through technology. If Government re-ran the introduction of My Health Record today would there really be a different outcome?

Authors: Lucy Goodlad and Peter Waters

Read more: Digital Health in Australia: 2021