You May Feel Differently About Your Private Medical Data After Reading This

Written by Marc Gagné 

IoT Privacy Has Different Connotations When Viewed Through the Healthcare Lens

When it comes to their own personal data, most people would prefer at least some level of privacy. That’s increasingly the case as the environment heats up with events like the one we just witnessed with Facebook and Cambridge Analytica. Now, as GDPR is heightening global awareness of privacy matters, some are taking action and making demands.

In a melting pot where privacy and monopoly concerns merge, the “Freedom from Facebook” movement seeks to break up the social media behemoth, claiming the platform is just too powerful. We can expect this movement and others like it to grow, especially if the EU questioning of Mark Zuckerberg reveals that the Cambridge Analytica problem was just the tip of the iceberg.

But there’s one area of the data ecosystem where people often take a different stance on privacy. From a certain perspective, the sharing of one’s personal data is seen as philanthropic… even necessary. In what might seem like a parallel, Bizarro World, people are even willing (and eager) to share their data with the corporate powerhouses of the world.

I’m talking about the medical research environment. When the sharing of personal data can be linked to advances in medicine that could improve or even save lives, privacy takes on a whole different set of implications.

Some People are Excited About Sharing Their Most Intimate Data

Sharing medical data is the new form of philanthropy. Donating your health data which, these days and for most people, consists of a vast, robust amalgamation from diverse digital sources, is the new thing: newsworthy, even.

That may explain why people are surprisingly amenable to sharing their health data — 60 percent, according to a 2017 Internet Trends report. That report also stated that the world’s collection of healthcare data is growing by an astounding rate of 48 percent annually.

The Possibilities are Astounding

The result of all this is that there’s a massive amount of medical data available for consumption. We can assume that medical researchers are aching to get their hands on it.

There’s even a name for this type of data, which can be used to advance medicine and improve health: the human digitome. This is to signify that it’s more than a mere amalgamation of data. It’s more like an entire digital ecosystem that represents the state of human health. As the IoT grows, that will become even truer.

The question is, how can all that data be shared in a meaningful way, one that works for research groups who need reliable data that’s auditable? How can there be a transparent process of exchange where everyone is assured of the validity of the data they’re accessing? What will be the platform for such massive, public exchange of data?

Those are all very important questions. Thankfully, some are already working on answers. Startups are hard at work developing blockchain-enabled platforms for sharing digitome data. And if you know anything about blockchain, you know that this technology solves each and every one of the issues named above:

• Access
• Privacy
• Security
• Auditability

Blockchain also solves another set of issues, those felt by the people who submit their digitome data. Their concerns are:

1. Privacy
2. Individual control of digitome data

Again, solved by blockchain.

Who Owns Medical Data Now?

Who has access to the stores of data known as the human digitome? Who owns and controls all this precious data that could potentially solve some of the world’s most pressing medical problems and save lives?

We know it’s not the people themselves. GDPR, which paves the way for ownership of one’s data across all collection points, has yet to even make an impact in the EU, much less the rest of the world. And where would people be storing their own medical data so that it’s secure as well as reliable and consistent from all access points simultaneously?

As it turns out, corporate behemoths are working hard to amass as much medical as they can. One leader in this area is IBM.

IBM, a Force to be Reckoned With

IBM is a growing force in healthtech. Big Blue has acquired several digital health databases in the past several years:

• Merge Healthcare, which processes and stores imaging data (CT scans etc)
• They also own Explorys, which brought in a massive data set from 317 healthcare providers and millions of medical records
• They own even more health data from their Phytel acquisition
• There’s a partnership with Apple for device data

IBM’s health unit, called Watson Health, has been feeding all this data into their AI entity (called Watson) for several years now. Health data analytics will provide insights, which IBM will then offer to companies like Johnson & Johnson and Medtronic.

We’re talking billions of points of data here, all of which is anonymized, theoretically. That’s in line with privacy concerns, of course. But what about from the patient’s perspective? Wouldn’t it be helpful to have all your health data in one place? How would that work?

Imagine Taking This a Step Further

What if, for every person, there was a complete digital health profile: everything ever collected and stored on a person, including lifestyle behaviors which contribute to a person’s overall health picture?

This comprehensive profile would consist of data gathered from the IoT, provider records (electronic medical records, or “EMR”, as they’re referred to in the industry), and literally, everything about that person that’s available online. Consider it a holistic, digital representation of a person’s health status.

Ownership and control of such a profile would necessarily lie in the hands of the individual. Each would grant access to their healthcare providers as they moved through life, enabling a more complete picture of their health. For research, people could grant access to subsets of their data, thereby making donations to specific areas of research as they pleased or saw fit.

It’s hard to think of how that would ever work without the use of blockchain. As for the legislation to make it all work, we’d be looking at GDPR-like movements in every country, where regulation occurs at the federal level.

For the Future, Making the Data Truly Useful

How are tech innovators envisioning the nuts and bolts of sharing medical IoT data? Is there a way to have the best of both worlds, where people can own and control access to their medical IoT data but where researchers had access to anonymized portions of that data? Again, it seems only possible through blockchain technology. Blockchain-enabled Medtech is truly set to disrupt healthcare research, which is just as exciting as the disruption in healthcare itself.