Google Inc. co-founder Larry Page expressed his dream to make health records accessible to the public. This would permit researchers to continue with their studies and experimentations, and possibly save thousands of lives.
During the TED 2014 conference in Vancouver, Page spoke of his ideas of making a better world, which were supported by Richard Pratt, a researcher at the U.S. Food and Drug Administration.
If the health records are available to everyone, the public would have known deadly side effects of different drugs and would have prevented death because of taking those drugs.
However, because of the tight restrictions implemented by the Health Insurance Portability and Accessibility Act (HIPAA), researchers cannot access some data. The rule protects the privacy of the patients' electronic health information. This led them to failing to identify trends, disseminate knowledge about the drug or illness, and save lives.
"These are the consequences of HIPAA's overcautious privacy rules," stated a team in a blog post. "HIPAA allows health providers and insurers to release patient health information for research use only if the researcher enters into contractual agreements with each individual data-holder or if the data complies with HIPAA's deidentification standards. These research exceptions are much too narrow to harness the full potential of the data."
However, confidentiality of the patients is the main concern here, which will be difficult to maintain given the sophistication of the technology and the statisticians.
"We have been pretending that by removing enough information from databases that we can make people anonymous. We have been promising privacy, and this paper demonstrates that for a certain percent of a population, those promises are empty," said John Wilbanks, chief commons office at Sage Bionetworks, a nonprofit organization that promotes biotechnology by practicing and encouraging open science, to TechCrunch.
While Page expressed his ideas that could benefit the majority, some see this as an "off-beat" move as it came amidst allegations that Google is aware of the surveillance activities carried out by the U.S. National Security Agency.