White House promotes patient access to data at invite-only meeting

Officials from the Obama administration, the office of the national coordinator for health IT and other agencies met (somewhat quietly, some noted) with a number of health IT enthusiasts and advocates for patient access to data yesterday. The goals of the meeting, according to some of those who were on the invite-only list:

  • Identify and prioritize a list of standards and best practice activities needed to advance patient and consumer access to health data
  • Establish a process for addressing the priority standards activities
  • Galvanize participants to engage constructively in this process

Speakers and participants included some familiar names: U.S. Chief Technology Officer Todd Park, national Coordinator for HealthIT Farzad Mostashari, Director of the Office of Civil Rights Leon Rodriguez and Peter Levin, CTO of the Veterans Administration were joined by e-patients and patient advocates Dave DeBronkart, Hugo Campos, Nikolai Kirienko and Regina Holliday, to name a few of the roughly 50 in attendance. 

The topics of conversation also were familiar: patient's rights to their own data (right now), patient identification and privacy, and the Blue Button initiative, for example.

Healthcare technology blogger Keith Boone, who attended the meeting, reported that Farzad and Levin shared some "new thinking" about the latter.

"Forget about 'dumb ASCII text' and think more about 'a brand meaning patient access,'" he wrote in a comprehensive post on the meeting.

Dave Chase, CEO of Avado.com, also attended and reported on the meeting for TechCruch.

In the post, he noted that the Berlin Wall is a good metaphor for improving access to health data. "In many respects, health IT is similar to the 'walled gardens' that persisted in mobile phones until they were torn down by the iPhone and Google's Android," Chase writes. "Just as the wireless carriers had their own proprietary environments for apps, health systems (and their EHR vendors) severely limit what can tie in with their systems directly impeding patient access to their health data."

To learn more:
- read Boone's post about the meeting
- read Chase's TechCrunch article

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