Happy Data Independence Day!

When my mom was hospitalized in 2009, we could not see her chart. It was barricaded behind the desk where the doctors and nurses sat- where I was used to sitting. It’s easy to see why that single paper chart stuffed with medication orders, progress notes, laboratory results, and vital signs was indispensable—and rivalrous. It was jealously guarded, simply because if I had it, you didn’t.

I spent the next five years in the federal government, championing and overseeing the rollout of electronic health records to doctors and hospitals. Those charts are now electronic. Unlike paper charts, they can be shared instantly, and at no cost. But our habits have lagged behind our capabilities. When it comes to information sharing, health care’s default position is still closed, rather than open. No amount of top-down regulatory mandates can overcome a cultural legacy of “doctor knows best”.

The system is poised on the brink of change. But it is we, the people, who have the power to flip that information-sharing switch into the open position. All we have to do is ask.

On this July 4^th, we are announcing the launch of #DataIndependenceDay. It’s time that we, the people exercise our inalienable rights. What if you or your family member got sick or injured this weekend? Could you access your health information online, when the doctor’s office is closed?

If you asked for and could get your data, you could look through it for potentially significant errors or omissions (10% of people find them). You could make sure your different doctors know what the other ones are doing (a ). You could keep your kids immunization records handy for school or camp. You wouldn’t have to recount from memory your entire health history every time you visit a new doctor. Maybe you would even donate your health data to science. But most of all, through the very act of asking, you would be changing health care for the better – making your care better, and improving it for others for years to come.

Let me explain how and why you can be one of the founders of this Data Independence Day.

It is the law of the land (called “HIPAA”) that patients must be granted access to their health information with very few exceptions. An update to those laws that was finalized in 2013 extends these rights to electronic health records. If you request that your records be sent electronically, and the data holder (the “covered entity” under HIPAA, which includes health plans and laboratories as well as hospitals and clinics) is able to send them in the format requested, they must. The law further clarified that the costs must be “reasonable and cost-based.” The costs of an electronic file of any length must be related to the cost of producing it- it should be essentially free.

Over $20 billion in taxpayer funds have helped more than 95% of US hospitals and 80% of doctors to transition to electronic health records, and the systems they are using have been certified to be capable of assembling electronic patient files, and of allowing patients to view their information online, download it, or send it securely to an endpoint of the patient’s choosing.

So why is the default in health care still a 30 day wait, a ream of paper and a $300 bill? Why are hospitals with over 100,000 discharged patients still reporting that not a single patient requested their records be sent electronically? Why are we still being told that the healthcare provider is unable to give us our own records “because of HIPAA privacy?”

Because we don’t know our rights. Because health care systems haven’t had to change their habits. Because it is still seen as safer to say “no” than “yes”. Because the systems that are technically capable of sharing information haven’t been tasked with doing so in practice. Because we don’t know where to put our records when we get them, and how having them can be of use to us.

Some have asked if this movement is a solution in search of a problem. Is the lack of data sharing simply reflecting an apathy on the part of patients? Should we just wait for the ever-knowing market to respond to consumer demand, whenever that manifests itself? I don’t believe that. When people are asked, they want to have access to their records; 41% say that they are even willing to switch doctors to get it. When offered online access, nearly half take advantage of it, and 88% of them find it useful. When it was made easily available through the “Blue Button, over a million veterans downloaded their health data. As Steve Downs of the Robert Wood Johnson Foundation remarked, “you can’t estimate demand for a bridge by the number of people swimming across the river.”

It is the belief of the founding fathers and mothers of #DataIndependenceDay that a sharp tug of informed consumer demand for their electronic health records at this juncture will begin to unravel the knot that has health care information trapped in silos. Consumer demand will cause health systems to re-examine their policies and realign their technologies – not merely checking a box to satisfy a regulatory requirement. This opening of health data silos will be under the patient’s control, and can lay the foundation for a healthcare system that sees patients as partners, and spur unforeseen innovation in technology that helps us manage our health, our healthcare, and healthcare finances.

This effort includes:

#Tracers

Inspired by (im)patient leaders like Regina Holliday and Dave deBronkart, we are connecting with people who will blaze the path in requesting their records electronically, who can push through the initial resistance and unfamiliarity, and illuminate the path for those who follow. We’ve created getmyhealthdata.org where people can learn their rights, how to request, what to request, and how to report back if they have any problems.

#Helpers

People who are experts in technology, privacy rights, and navigating the medical records process assist the #tracers. The Robert-Wood-Johnson Foundation-funded “Flip the Clinic” movement has created easy to use tools to help healthcare clinics and hospitals make the switch

http://fliptheclinic.org/flips/accessourdata/

#Tech

Code for America has led development of Vocatus.io, an online medical record request generator, which helps facilitate and route requests for electronic copies of medical records to the right place, and track what happens next.

#Apps

There are a growing number of products and services to provide a secure place for people to receive, store, make sense of, and use their electronic health data. https://getmyhealthdata.org/home/using-your-data/

So today, declare your independence from a health care system that has been closed to you for too long. Go to www.getmyhealthdata.org to prepare, then ask for your records to be sent to you electronically. You can use the Vocatus website to facilitate your request. Help your parents do the same. Use one of the tools that can help make it easy to assemble your records. Share your experience with others. Help lead this country towards (healthy) life, (data) liberty, and the pursuit of happiness.