House panel discusses putting patients in control of health information

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Putting healthcare information in the hands of patients and giving them a voice in their own care was the theme that threaded its way through the 21st Century Cures panel discussion Tuesday morning.

The House Energy and Commerce Committee headed the panel, with Rep. Fred Upton (R-Mich.) moderating, which covered what steps Congress can take to bridge the gap between advances in healthcare technology and the regulatory policies that govern them. The committee released a white paper on the initiative last week.

Panelists included industry experts, doctors and CEOs--all of whom touted the importance of consumer control over their own healthcare information.

"For the first time, technology and healthcare are coming together and consumers want to be part of it," Anne Wojcicki, co-founder of 23andMe, said.

Mark Blatt, the Worldwide Medical Director of Intel Corporation, spoke about the OpenNotes program, adopted by some healthcare facilities, including the Cleveland Clinic. Blatt used the program as an example of how patients can have access to their healthcare information--the program gives patients access to the visit notes written by their doctors.

It's a free technology that encourages patients to directly get involved in their healthcare, Blatt said.

Martin Harris, CIO of the Cleveland Clinic, agreed, discussing his own facility's experience with the program. By engaging patients, he said, it changes the practice of medicine. Consumers drive the model, he said, which allows them to take personal responsibility for their health.

Harris also spoke about HIPAA compliance, saying there should be general regulation of the program that empowers a patient to opt out.

Gina Gavlak, chairwoman of the National Advocacy Committee for the American Diabetes Association, said that while having people put their eyes on their data is "empowering and engaging," the industry needs to figure out what to do to get people engaged.

"We're expecting people to step into an area they haven't been able to step into before," she said. "[People] are going to need help getting to a level where they're going to be able to actively engage."

To learn more:
- view the list of participants and watch Upton's opening statement

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