Why do we care so much about health data privacy?


We live in the era of data.

Every time you look at your phone, that’s data; every time you search for TV sales on Google, that’s data; every time you take a damn step, that’s data.

Although estimates widely vary, let’s say the average person is generating ~0.77 gigabytes of data per day; multiply that by 3 billion internet users worldwide and you are talking about 2.5 exabytes (or 2.5 billion gigabytes) of person-generated data every day. I didn’t even know what an exabyte was until writing this article.

So why in this ubiquitous world of data is health data treated like the younger sibling that has to always be protected from the big, bad world?

What about health data requires it to be put under such an added level of protection when compared to everything else? I’m pretty sure Google, Amazon, Facebook, and a dozen other corporate entities have more sensitive and detailed intel on me than my health record ever will.

The number of times I’ve heard a great healthcare idea shot down for “privacy concerns” is mindbogglingly frustrating. It is no wonder healthcare has been left in the dust when it comes to innovation and the digital age.

A lot of it has to do with legacy policy and risk-averse institutions that still practice the paternalistic style of medicine preaching that we as patients (side note: this term needs to go) are too dumb to handle our own health record and should only do as we’re told.

Well, that era is clearly over, and the time of the informed health consumer is now. Apple recently announced that through a test version of their Health app, users will now be able to download and view their health record on their iPhone from an initial set of participating organizations in the US.

Apple

“We view the future as consumers owning their own health data,” Apple Chief Operating Officer Jeff Williams said to CNBC. And yet, naysayers and humbugs instantly point to the privacy concerns of enabling such an ecosystem.

Well, the current way of doing things ain’t working so I think the only way our collective global health system will become both sustainable and innovative is by empowering consumers to lead the charge.

A lot of people don’t realize that we have technically owned our own health record all along. We as human beings have the right to access our own health data and show it to whomever we please; our hospitals and doctors just make it incredibly difficult and annoying to do so.

In addition, health systems have spent and continue to spend billions on interoperability so that different healthcare organizations can communicate more effectively with each other under the guise of “patient-centricity”.

But what this Apple announcement shows is that the key to being client-centric isn’t necessarily about building these complex channels around and to follow the consumer, but to let the consumer be the channel themselves.

Why focus on the ever-increasingly complex task of connecting the organizations when the common denominator in any healthcare interaction is always the consumer?

Instead of having to set up thousands of interfaces within and between organizations, why can’t the consumer just carry their data around with them wherever they go, share it with relevant providers, and iteratively add onto their record as they move through the health system?

I’m not saying what Apple is doing is the end-all answer, but it is surely a step in the right direction. It is no longer acceptable to prioritize health data privacy and security over consumerism and accessibility. It is time for the powers-that-be to loosen up a little and let the possibilities of the informed health consumer truly take hold.

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