This Independence Day — Free the Data!

This coming weekend is Independence Day, the formal name for what we know of as July 4^th. While this day has come to mean barbecue and fireworks and a day off work for most Americans, it’s original meaning, of course, was the statement that America was its own independent country, free of control of others; it is also the day that the Declaration of Independence was signed by the Founding Fathers. As we all know because we were forced to memorize it in fourth grade, the Declaration of Independence starts like this:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.”

Nearly 240 years have passed since the original American Independence Day and many rights and freedoms not specifically contemplated back then are being openly discussed this year in particular. Freedom of people to marry and the right of Americans to have health insurance are very much in the new. And there is a whole new movement on the rise–one that focuses on the right of people to have access to their personal healthcare data. The movement’s mission is this: free people’s healthcare data from the tyranny of closed systems. While this may not be as profound a human rights issue as some others that affect the masses, it is very profound for many individuals, particularly when they are ill and traveling around the healthcare system like they were let loose in a pinball machine.

I was brushing up on my Declaration of Independence history and went to the Interweb’s most reliable source: Wikipedia. In the description I found this paragraph and it made me laugh, as it reminded me exactly of the topic at hand:

After ratifying the text on July 4, Congress issued the Declaration of Independence in several forms. It was initially published as the printed Dunlap broadside that was widely distributed and read to the public. The source copy used for this printing has been lost, and may have been a copy in Thomas Jefferson’s hand. Jefferson’s original draft, complete with changes made by John Adams and Benjamin Franklin, and Jefferson’s notes of changes made by Congress, are preserved at the Library of Congress. The best known version of the Declaration, a signed copy that is popularly regarded as the official document, is displayed at the National Archives in Washington, D.C.

Why is this relevant? Because today our medical records are routinely lost and, when available, are locked away in official “archives” untouchable by human hands, covered with notes we will never be able to decipher. While Americans technically do have a legal right to copies of their personal medical records, the way it works is this: you request your records if you can figure out how and where, the provider usually has up to 30 days to produce them; you will probably get unusable paper copies that can’t be easily shared and you will not know if these records are actually complete. The chance that you will get your records in a format that can be electronically merged with another providers’ is virtually nil. As it turns out, our nation’s electronic medical records are largely independent countries of their own, incapable of sharing. The data are locked in there screaming, “Give me liberty or give me death,” to quote one of those Founding Father guys (Patrick Henry, to be specific).

There are exceptions. The Veteran’s Administration and federal health plans use technology called Blue Button that allows health data to be freely and readily shared among other such entities. But private providers outside of government rarely subscribe to the Blue Button program. Companies like Humetrix are trying to remedy this (full disclosure: I’m on their board).

So, riding in like Paul Revere, a number of activists–data revolutionaries if you will– are starting a formal movement to liberate the data. The Get My Health Data initiative is “a collaborative effort among leading consumer organizations, health care experts, former policy makers and technology organizations that believe passionately that consumer access to digital health information is an essential cornerstone or better health and better care, ” as they say about themselves. The movement’s Founding Fathers and Mothers include various policy and not-for-profit entities (the National Partnership for Women & Families is the official coordinator), and also individuals like former National Coordinator for Health IT Farzad Mostashari and former Chief Technology Officer of the United States, Aneesh Chopra.

Together the Get My Health Data crowd have declared this impending July 4^th a new type of Independence Day; I recently saw Farzad exhort the audience to take that day to demand their health data. His goal is to get 1 million people (or more) to seek their data before next July 4th in order to prove the importance of this initiative. The entity is asking people to become “tracers,” defined as people who request their data be given to them in electronic form and then report back about what happens with that request. They are also seeking “helpers” to help inform the world about their rights to data and how to get it and specifically seeking vendors to help smooth over the process for consumer tracers.

This issue is loaded with complexity for many reasons. First of all, a large number  of people really don’t want to see their health data and many don’t care about this issue at all. Hell, most people don’t care about their health, much less the data that prove how bad it is.  Furthermore, many physicians don’t like sharing their data because they worry about how patients will react to what they read, either because it is too complex to understand or potentially worrisome or even inflammatory. If you haven’t seen the Seinfeld episode where Elaine requests her data to find that the doctor has described her as a difficult patient, you gotta see it. Hilarious but only because it’s so true.

Hospitals are subject to meaningful use rules that require them to have 5% of patients access their records electronically (or face financial penalty). Some hospital systems are actively seeking to have the rule changed so they have met their requirement if only 1 person access their records electronically. Yes, that is correct: 1 person. They are asking that the rule be changed so they are not penalized if 1 human being, who could be the hospital’s CIO I imagine—the only person who can actually figure out how to access the records—gets their records in electronic form.

Say what? No wonder Farzad was on a rant when I last saw him. But hospitals say that they rarely get asked for the records and I bet that is actually true. It is only when people get up the nerve to get a true second opinion or when they are extremely sick and seeing multiple doctors that they tend to get engaged enough to care about this issue. But you know what? So what?! It should not be up to “the system” to tell us when we can have records that pertain to our own health—records that literally matter only to us as individuals in the end.

Can you imagine if you went to the bank for your financial records and they told you that they would give you a stack of paper in 30 days that would cryptically tell you about your net worth and not allow you to transfer data or money between accounts? You would think you had gone back in time 30 years. Of course today we can all get reams of personal financial data by standing at an ATM next to a Starbucks any time of day or night—convenient, comprehensive and caffeinated. And that’s how it should be with our medical records. OK, maybe next to a salad bar, not a Starbucks, but either way, free the freaking data. For the few people who actually want to see and use their records, it can literally be life-changing. And for those healthcare technology vendors that stand in the way of this, they should take a look around at other industries; they will find that open systems and data sharing INCREASE market size and this potential revenue growth. Welcome to the 21^st Century; now let’s get on with it.

Here’s a little known fact: while we all have access to our health data by law, there is only 1 state that has a law saying that people actually OWN their healthcare data: New Hampshire. In every other state your healthcare data is owned by someone else: doctors, hospital systems, employers, whatever. That just doesn’t seem right to me. New Hampshire is rarely pointed out as the state that sets national trends, but, in a highly relevant coincidence, it also happens to have been the first of the American colonies to establish its own independent government separate from Great Britain.   To the rest of the 49 states: it’s time to follow New Hampshire’s lead by sponsoring independence in its many forms and especially by putting health data in the hands of the people who make it possible, independent from those health systems where it lives in captivity. Many say that owning one’s data is unimportant as long as one has access to it, but I disagree.   If you own something you have a right to get it and use it as you wish—it gives you leverage.

 

There was a great recent article about this whole topic in the Wall Street Journal, which you can find HERE. Also, the Get My Health Data folks graciously shared this Data Liberty 1-pager REVISED v.2[1] and you can also check out their website at http://getmyhealthdata.org.

On this coming July 4^th, declare your health independence by joining the movement to free the data. Check out Get My Health Data, become a tracer or a helper or just a person who wants to control your own data. You never know when you may need it.