Reading Dr. Shlain’s blog this past Tuesday about health data and how companies are getting rich off the backs of patients, I was quite taken by one of his most poignant lines:
Encyclopedia Britannica is a cautionary tale for us in this instance—they had all the data but did not understand its value when digitized. Wikipedia ate their lunch.
For those who may not understand the reference when it comes to digital health information, let me elaborate on this point a bit. In 2012, after 244 years of continuous operation, Encyclopedia Britannica went out of print, unable to keep up with the instant demands of the internet age. Back then, Britannica president Jorge Cauz said of the development: “Britannica won’t be able to be as large, but it will always be factually correct,” a small parting shot at the perceived inaccuracies of Wikipedia’s open-door editing.
While few would argue the merit of Britannica’s experts, it turned out the vast majority of fact searchers valued quick access, continuous updates, and digital availability over authoritative accuracy (and, depending on who you ask, Wikipedia is still very accurate in comparison to other sites). As Dr. Shlain alludes to, we as patients have the right to access our health data, but few hospitals will give us that information digitally, in an easily shareable format. It generally comes as a giant stack of paper, via mail or fax, and you (and your doctor) have to dig for the pertinent details. Meanwhile, health data companies that turn our information into a searchable, sortable, instantly-deliverable asset, then de-identify it and sell it “out the backdoor,” can pretty much “mint” cash. In a digital format, our health data is indeed “liquid gold” to many interested parties.
So why is it that patients—the generators of the data—get the Britannica paper version of their records, while the data CEOs keep the digital formats for their paying customers? Because giving patients control of their health data in a searchable, actionable digital format—a la Wikipedia—would cut into their data market share. Dr. Shlain is absolutely right: we need to get our heads out of the sand and do something about this inequitable situation, before we the patients end up as another cautionary tale.
A large part of what Ciitizen does involves the digital conversion of data into an actionable profile. We automatically refine your health data from print Britannica into digital Wikipedia, but we do so on behalf of the citizen. As a patient, you have a right to all your health data and can request that information from any hospital where you have received care. As a ciitizen, however the data is provided to you, it can be immediately transformed into a digital profile, able to be searched, filtered, organized, and securely shared. We don’t sell it. We don’t de-identify it behind your back. We’re simply here to make your health data work better for you.
Like Dr. Shlain, we can also imagine a world where patients control their data and can share it—or even gain value from it—for their own benefit, which is why we need to start by making that data both accessible and actionable. With patients in control of their health data in a digital profile, we’re hoping to shift the balance of power back to the people. So watch out health data CEOs: with the power to now aggregate and share their own digital information, the Ciitizens will be coming to eat your lunch.