When we control our own health information, only then will we truly be empowered to make our own health care decisions. In a world where Uber and Google have become verbs, technology has the power to put patients in the drivers’ seat of their own health care, where they belong.” – Jared Kushner

The above quote comes from a recent post on Recode from the President’s senior advisor in conjunction with the Administration’s announcement that they were seeking to free-up personal health information.

“At a time when health-care data is being generated from so many sources, too often that data runs into the hard walls of closed systems that hold patients, and their information, hostage,” said Seema Verma, administrator of the Centers for Medicare and Medicaid Services, in prepared remarks for a Las Vegas conference of health IT professionals.

CapitolVitals recently had the chance to talk with BurstIQ, a company that hopes to make personalized health data more readily available, more secure, and help build the tools to make sense of it all.

The company provides a platform the combines the power of blockchain and a big data engine to make all of this possible.  We talked briefly with Amber Hartley who currently serves as Chief Corporate Development Officer for the company.

The following are four key takeaways from our conversation.

CapitolVitals: Why did you start this company and what’s the value proposition?

Hartley: Fundamentally we started the company because we wanted to democratize health. We want people to have better access to their own data and the ability to make use of that data to live their best life.

For some people, that may just mean being able to secure your data in a private platform that allows you to control who gets to see it and how it is used. For other people, that may mean using your data to access products and services that really matter to you. The BurstIQ platform is a blockchain-based big data engine that allows users to securely manage, share and monetize data.

On top of this core, we are building a new health ecosystem where your data is essentially a currency that you can use however you want. Each person has data that is valuable both to them, to providers and companies trying to help them be well, and to researchers searching for the next big breakthrough. We think you should be at the center of that – using your own data in whatever way you want to live a healthy life – to access health services, to support research, or to stay completely private.

While the platform can handle any kind of data, we are starting with healthcare because we felt that is where the greatest need for this kind of solution.

CapitolVitals: What is a good example of how this technology might be used by a consumer?

Hartley: Personalized medicine is a perfect example of how the platform can be used in a really powerful way.  Personalized medicine tests are becoming much cheaper, more commonly prescribed by providers and more widely available through services like Ancestry.com or 23andme.

The problem is that, for the most part, much of that data exists in silos.  That makes it really difficult to make use of that data.  Even if you are a provider and you can get ahold of personalized medicine data, either because you prescribed a test that generates the info or because a user brings it to you, there is still only a limited amount of insight you can gain from that data when it is viewed in isolation.

The BurstIQ platform can take all of that data, apply machine learning and swarm intelligence to it, and identify population-level or even global trends that allow providers to optimize care for individual patients – all without compromising anyone’s privacy or security.

For example, the platform can analyze all data across the blockchain and use it to make a recommendation for a single person: that they would really benefit from a specific kind of test or that their wellness plan should include specific benefits because they are most likely to work for that specific person.

CapitolVitals: Is this another attempt at driving adoption of personal health records?  Haven’t other companies tried this and failed?  How will you all succeed?

Hartley: There are similarities to personal health records, but we feel like simply aggregating data in a PHR isn’t enough. OK, so I can see all my data in one place, but then what? I can share it with my new doctor. That’s great, but it’s not game-changing. So yes, the platform can do those things, but the biggest difference is what we allow people to do with their data, and what the platform can do with data on a population and even global level.

Blockchain provides an immutable ledger of every single transaction that happens on the platform.  Everything that happens to your data, the platform records.  If you share your data with a provider, the blockchain records it. If you add a new lab report, the blockchain records it. If you change your name, the blockchain records it. All of that data is then in the blockchain and cannot be changed. As a result, you have a level of provability and reliability in the data that you really can’t get through other means.

BurstIQ takes that longitudinal, immutable ledger for each person and combines it with a big data engine.  This allows the platform to support on-chain data management, analytics, machine learning and network effect intelligence – we can do things with the data that go way beyond just transferring it from one provider to another.

For the average person, this means that you can gain value from your own data in lots of different ways. You could also choose to share it with a researcher who is working on a project you care about.  For instance, there may be a researcher in Europe who says he is willing to pay 50 euros for people to share data and is looking for people with specific kind of data.  You can go into the platform, determine if you are a particular match for that specific research program and decide for yourself if you want to opt in and send your data to that researcher.  Or you could choose to share your data in exchange for an individualized digital health coaching service, or for a personalized insurance package, or for discounts on a medication, whatever. Basically, the platform enables an entirely new economy where your data is the currency, and where you are completely in control.

And for businesses, the platform opens up access to entirely new data streams, so that businesses can gain deeper insights, make smarter and more effective products, and reach new markets.

CapitolVitals: What about the security of the data that you are warehousing?  How does compliance with current federal privacy regulations factor into what your technology is capable of?

Hartley: HIPAA is always at the top of our minds, for obvious reasons.  The platform uses a distributed blockchain architecture, so I wouldn’t exactly say we’re warehousing data. Unlike traditional data warehouses or even other blockchain-based systems, we store data on-chain across the distributed network. We can then take advantage of that distributed architecture to add security layers to the data that simply aren’t possible with other systems. The platform complies with NIST security standards – it goes way beyond what HIPAA requires.  In addition, we can apply regional regulations via smart contract so the platform can easily adapt to particular requirements in any region of the world.

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Bobby Clark is Of Counsel at Winning Strategies Washington, a DC-based government relations firm, and a co-founder of Concordis: Strategy and Analytics. He previously served as a senior health policy for a senior member of the Energy & Commerce Committee, and most recently for the Department of Health and Human Services during the Obama administration.

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