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Health Data Control

Taking Control of your Health Data

An Ocean of Data 
Big data now touches most aspects of our lives: data about our homes, our spending, and our health, just to name a few. However, that data doesn’t actually belong to us – our health care provider or insurance company may own it, or perhaps a major tech company owns it. Here are three simple reasons why you really should own your own data going forward.

Making informed decisionsFor this to happen, you’ll need to own your own data. Many already have access to Electronic Health Records – but without complete access to your own health data, you’ll still be forced to make decisions based on limited information. Though nothing can replace the experience and insight of a highly trained physician, combining private health data with your EHR records and a sophisticated digital assistant (think Siri or Alexa for health) could be the ultimate tool for making vital preventative health decisions.

Financial benefits. Health care is expensive as it is (especially in the United States) and ownership of health data can make health care more affordable. Research from the Journal of the American Medical Association showed that in 2016, health care costs amounted to $10,350 for every man, woman, and child. If you owned your own data, you could stand to benefit tremendously, as that data is invaluable to pharmaceutical and device manufacturers. Ownership of your data is quite literally money in the bank.

Retaining your privacy. You can’t turn on the TV nowadays without hearing about an internet security breach – either from a social network, an entertainment giant, or even that hotel you stayed at last year on business. With sophisticated biometric tracking on smartphones and smartwatches, you could have full control over the collection and storage of your data, and not have to worry about some global corporation (or local hospital) playing fast and loose with your data.

Protecting your health data

Eric Topol speaking at Stanford - Protecting your health data

Eric Topol speaking at Stanford | Source: Stanford.edu

A major component of this health care story is modernizing the legal system in your market. According to Eric Topol, author of “Deep Medicine”, modernizing the Health Care system involves allowing people to own all of their own data, as we’ve just discussed, making our data mobile so you can take your data with you rather than keep it at your local hospital, and bolstering consumer protection laws to better prevent the theft/hacking of private data. At that point, we will truly have a modern personalized health care system. Let’s take a quick look at a small pocket of Northern Europe to see a real-world example of what that might look like.

The eEstonian Revolution 

Tallinn, Estonia - eEstonian Revolution

Tallinn, Estonia | Source: Wikimedia

Images of Estonia (est. population 1.3 million) in Northern Europe look like something out of a storybook, with meandering cobblestone streets, rustic red roofs and idyllic clear blue skies. It might not look like it, but this country is showing the entire world how to democratize data and empower its people with technology, especially in the medical space.

Nearly every Estonian citizen has an eID card which carries their encrypted digital records. According to their info site – e-Estonia –  “over 95% of data generated by hospitals and doctors [have] been digitized and blockchain is used for assuring the integrity of stored medical records as well as system access logs.” This means that any changes to patient medical records are transparent and secure, and citizens can go to any hospital in the country and their doctor would have access to all their medical history. Estonian medical staff have accurate, comprehensive data, allowing them to spend much less time on administration (and thus have more time to spend caring for patients).

“Over 95% of data generated by hospitals and doctors has been digitized…”
– e-Estonia.com

Looking Forward
What Estonia has achieved at a small scale is the democratization of data. To scale the Estonian model to larger populations, we will need a great deal of political will, but once we have it, we can really enjoy the potential of all these amazing hardware and software innovations. Until then, we’ll just be tracking our steps, our sleep quality and our glucose levels – without being 100% certain that no one else is too.

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