Digital health can make us live longer – but at what price?

Health data is the next big data set about ourselves companies are eager to get their hands on. And wearables make that easy. But have we really thought this through?

Do you want to avoid dying unnecessarily? Silly question, right?

To aid that, wouldn’t it be great if you had health monitors on you at all times?

Well, we’re already closer to that than you might imagine.

A few weeks back, I was just sitting down when my Apple Watch started urgently pinging at me. My heart rate was well above normal, at a time when I appeared to be rested. My Watch knows my normal heart rate patterns, and saw something was off track enough to alter me. Time for a trip to the hospital?

Well, not this time. If I hadn’t been sat in an airport, having got myself stressed about an upcoming flight, I might have been more worried. It was reassuring, though, to know that it works – and I might have some warning about forthcoming heart issues. And a little device on my wrist was doing the work of the complex monitoring apparatus that I ended up wired to the one time I had a health scare. (It turned out to be my first — and only, to date — panic attack, rather than anything more sinister.)

At a consumer level, health tech has been largely seen as a positive benefit. From the monitoring increasingly built into wearable devices, be they general purpose devices like my watch, or more specialist devices like Fitbits.

However, the data they generate can be somewhat leaky. There was the rather infamous story about American military bases being leaked by Strava run information. Sometimes it just leaks the data about how your significant other is falling in love with someone else.

But sometimes the leaks are even more serious, as Singapore has just discovered. The Straits Times reports:

In the worst cyber attack in Singapore’s history, hackers broke into the computers of SingHealth, the Republic’s largest public healthcare group, and scooped up personal information on 1.5 million patients last month.

The data stolen included prescription details for the prime minister.

Health data is honey for hackers

This is causing some understandable anxiety in Australia, where they are in the process of rolling out a new national database for health, My Health Record. It’s not a complete clinical record, but instead a summary of a patient’s health issues. But it’s proving controversial, with many people choosing to opt out.

All personally identifying data is at risk online – it can be exported easily for fanatical gain. But health data is a particularly attractive target.

As a group of academics wrote for The Conversation:

Storing records digitally with online access greatly increases their accessibility for criminals, hackers and snoopers. Health records are valuable as a means of identity theft due to the wealth of personal information they contain. They are a huge prize for hackers, fetching a high price on the Dark Web.

The UK pulled out of a similar project two years ago, amongst security worries.

It’s inarguable that there’s value in making health data available. It’s inarguable that there’s value in having your devices track some health information about you, as my Apple Watch example above showed. Indeed, it was saving people’s lives even before the warning was added.

But we need to start thinking very seriously about the security and risks inherent in this data collection. I’m reasonably happy with my Apple Watch and iPhone storing data about me – because it’s stored on device, and is encrypted. If I want to share it – it’s by choice, not by default. And generally, I’ve chosen not to share it, and that will remain the default until a compelling reason emerges for me to do so. Right now, I’m just enjoying the health benefits of what we used to call the quantified self. (We had talks about that waaaaay back in 2011).

Big health data?

But, perhaps the problem lies with the approach we’re taking. Does all health tech need to be centred on an individual human being and their data. Or are there interesting things we can do with aggregate and other data? WIRED UK recently looked at some interesting health startups – and few of them were individual centric. For example:

  • Heterogeneous – allows pooling of DNA sequences, and people retain ownership of their personal data
  • Kry – reduces pressure on Doctors – and disease spread risk – by facilitating phone-based consultations when needed.
  • Oxford Heartbeat – turns 2D scans into 3D models, allowing more accurate stent choice during surgery.

Until we’re happier about our ability to hold health data securely, perhaps we need to let go our consumer focus and think again about health from the big data angle, where large anonymised data sets can lead to better health outcomes.

After all, isn’t that how medicine has worked for generations?

Photo by Ankush Minda on Unsplash