Improve patient data sharing, industry says

Medical industry leaders gathered on Tuesday said they would like to see legislation that would allow more sharing of patient data, but lawmakers said they were worried about “nefarious” use of the data to target individuals.

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Industry leaders were part of a roundtable discussion to explore ways to improve the healthcare system through the sharing of medical data.

“I’d like to democratize healthcare,” said Anne Wojcicki, CEO of 23andMe, a company that provides people with medical ancestry data. “Give millions and millions of people access to their information.”

Wojcicki’s sentiments were echoed by other healthcare executives, who asked lawmakers to allow electronic medical records companies to charge physician’s offices for transferring patient records, help improve cloud computing and invest in more federal medical research.

Speakers said sharing more data would change the healthcare system from one that relies on “evidence-based practice” to one that uses “practice-based evidence.”

Paul Magelli, chief executive of Pervasive Health, an electronic medical records company, says the healthcare system’s “moonshot” should be to stop all adverse events that happen because physicians doesn’t know a patient’s medical history.

He says that’s doable, with more data sharing.

Magelli also says clinical trials are “hugely inefficient” because patients and researchers are often unable to connect to find new treatments.

“My sense is a simple investment in ClinicalTrials.gov…would go a long way to allow us to take patient records and match them with research,” he added. “Physicians through that process can immediately see if their patients qualify for a trial.”

ClinicalTrials.gov is a site run by the National Institutes of Health where medical researchers submit data on mid- to late-stage clinical trials.

While sharing medical data can help healthcare providers personalize medicine, lawmakers said they were worried about the privacy implications.

“Congress has been snooping and leaking any information for political gain,” warned Rep. Phil Gingrey (R-Ga.). “You take the same thing and you transfer it to medicine, how much more scary is that?”

He and other lawmakers said it is important that future data-sharing processes can be trusted by patients.

Tuesday’s roundtable was the second of its kind and lawmakers are hoping to release more reports about how they should use the information to develop legislation that promotes healthcare innovation.

Rep. Fred Upton (R-Mich.), chairman of the House Energy and Commerce Committee said it was unlikely any new legislation based on the hearings would be proposed until next year.