Industry asks for legislation advancing patient data sharing

Medical industry executives told Congress that they would like to see more legislation allowing sharing of patient data, but legislators expressed reservations about unauthorized access to protected patient information, reported The Hill.

“I’d like to democratize healthcare. Give millions and millions of people access to their information.” said Anne Wojcicki, CEO of 23andMe, a company that provides people with medical ancestry data. Industry leaders generally asked industry to allow EMR companies to charge physician offices for transferring patient records, help improve cloud computing and invest in more federal research, according to the article.

Paul Magelli, CEO of EMR company Pervasive Health, said patient sharing is essential to help prevent adverse events, and that 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 said, according to The Hill. “Physicians through that process can immediately see if their patients qualify for a trial.” ClinicalTrials.gov is a National Institutes of Health clinical site where medical researchers submit data on clinical trials.

Lawmakers, however, expressed worry about breaches in privacy, and Rep. Fred Upton (R-Mich.), chairman of the House Energy and Commerce Committee, said new legislation based on the hearings would not be proposed until next year, according to the article.