The Importance Of Avoiding Data Monopolies In Healthcare

The power of data in healthcare is something that I’ve touched on a number of times.  It’s an issue that is increasingly recognized by organizations from across healthcare. Indeed, a recent report from the Richmond Group of medical charities highlighted the potential for data to make a real difference.

“Healthcare data is one of the NHS’s most precious resources. It allows individuals to be empowered in their own care, medical professionals to improve and tailor individual treatments and the system as a whole to learn and increase its understanding of what causes disease, how it can be prevented and how it should best be treated,” the report says.

Nowhere is this being put to the test more than at Google.  Their Verily life science arm are embarking on a project powered by their new Study Watch device.  The project, known as the Baseline Project, is aiming to recruit 10,000 people to participate in a multi-year study into finding predictors for heart disease and cancer.  Participants will subject themselves to extensive monitoring and testing via the study watch that will record their activity levels in real-time.  In addition to the readings from the watch, participants will also undergo x-rays and heart scans, and will also have their genome mapped and blood tested at regular intervals over a four year period.

“No one has done this kind of deep dive on so many individuals. This depth has never been attempted,” the team say. “It’s to enable generations to come to mine it, to ask questions, without presupposing what the questions are.”

Meanwhile, Google’s DeepMind unit have been experimenting with a blockchain style ledger technology to keep data safe and secure.  To a large extent, these developments are good, and very much the direction the industry needs to go in.

Danger signs

Despite the promise however, I’m more worried than I am excited.  If you look at the tech industry as a whole, the biggest companies in the world (Alphabet, Amazon, Apple, Facebook and Microsoft) have created seemingly insurmountable dominance of their sectors, with that dominance based upon overwhelming control of data.

The network effect is well known in tech circles, and helps the strong get stronger, but the same phenomenon applies with data.  The more companies hold, the better able they are to improve their products and services, which then ensures they gain access to more data.  Indeed, such is the power of data, especially when combined with AI and high powered computing, that even industrial heavyweights such as GE are now positioning themselves as data firms.

Access to such vast databases provides a protective buffer to the tech giants as replicating these resources is incredibly difficult.  Such data driven dominance makes traditional antitrust techniques ineffective and with regulators struggling to keep pace places the burden of regulation largely on the companies themselves.

A recent paper from the Royal Society highlighted the need for data governance to be at the heart of the new AI-based economy, and nowhere is this more so than in healthcare.  We cannot rely upon the tech giants to regulate themselves however, and a recent Cambridge University paper was scathing of the data governance by DeepMind in their partnership with the Royal Free hospital.

Predatory practice

Not only do such data dominated platforms generally offer a bad deal for consumers, but they also present a risk to the wider ecosystem too, as they allow the platforms to impose preferred customer clauses into any arrangements.  Dominant players can also stifle competition by simply buying potential rivals before they become a threat.

The potential of liberated data to do wonderful things in healthcare is undoubtedly enormous, but that data needs to be owned by us and regulated impartially.  We cannot sleep walk into a time whereby our health data is effectively owned by a tech giant, as so much of our online data is today.  This is already happening with the data generated by the Baseline Project mentioned above, and there exists a real risk of the same happening with data that is quite probably a lot more valuable.

With Google already making moves in this area, we’ve moved beyond the time for yet more talking.  It’s time for the NHS, and other similar bodies around the world to start moving on this and providing frameworks and environments to effectively, safely and securely manage the panoply of health data that we can now easily generate, and to govern the way in which that data can be securely shared with both providers and researchers.

As Victor Hugo famously said, there is nothing as powerful as an idea whose time has come, and the time is now for this to become less about talking and more about doing.

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