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Our Pursuit of Data Liberty

By Erin Mackay and Christine Bechtel, GetMyHealthData Coordinators 

Just over a year ago, the health care community found itself at a crossroads: Now that almost every provider in the country has some form of electronic health record, why were there reports that few consumers were going online to view, download or share their health information? Didn’t patients want their health data? And with all of this technology in place, why weren’t we achieving the promise of electronic health information sharing?

A team of leading consumer, health, and technology groups along with individual experts and former policy makers came up with a theory: consumer demand for their digital health records would unlock data to move more freely across the health care system.  We believed a sharp tug of informed consumer demand could flip the information-sharing switch into the open position and free data from hard drives and filing cabinets to be put to better use. We kicked off a 12-month experiment, courtesy of the Robert Wood Johnson Foundation, to put this idea under the microscope.

With the launch of GetMyHealthData, we took our theory into the field. We recruited volunteer patient “Tracers” to request their health data and report back to us on their experience. We developed a suite of resources to help Tracers navigate the request process.  We built an online storyboard to raise awareness about their experiences and the importance of data access. Tracers showed us what it’s actually like for people in the real world, outside the federal policy bubble that dictates how things are supposed to work. These individuals helped blaze a new path forward; we shared their feedback broadly to raise awareness and inform public policy.

As it turns out, patients do want their data. They recognize its value. They are requesting it.

Some individuals have patient portals that offer easy, convenient access to information. Some providers waive fees for creating or mailing copies of records, understanding that an informed patient is a powerful partner.

But across the country, too many individuals experience huge price tags for reams of paper, valuable information trapped in PDFs or on CD-ROMs, and delivery options that don’t work for them, including making a trip to a hospital basement. (Carrier pigeons would be faster!) Worse yet, consumers run headlong into outdated cultural attitudes that too often treat information requests with skepticism. Requests to share information are viewed as an administrative annoyance or, at worst, a risk to business interests.

More about the reality our Tracers brought to light, including challenges and bright spots, can be found here.

In all scientific progress, theories are proposed, tested, and (dis)proven. When it comes to unlocking health data, consumer demand is there.

Our theory was wrong.

If demand isn’t the answer, how about the other side of the coin: supply? Imagine walking into your doctor’s office tomorrow morning and being asked, “Do you have any new health information we should incorporate in our records?” What if, when the appointment was over, you were asked if you wanted any data generated from that visit sent to your email or an even to an app?

So what’s next: How do we make patient data access this easy, automated and routine? We invite you to walk through our Tracers’ journeys, learn from them, and consider what role you can play in improving the experience of sharing and using data with patients and families. Together, we can forge a new path.

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