I’m convinced that there’s a wave of innovation coming in healthcare, driven by new kinds of data, new ways of extracting meaning from that data, and new business models that data can enable. That’s one of the reasons why we launched our StrataRx Conference, which focuses on the importance of data science to the future of health care.
Unfortunately, much of the data that will enable an entrepreneurial explosion is still locked up — in paper records, in proprietary data formats, and by well-intentioned but conflicting privacy regulations.
We’re making progress towards open data in healthcare, but there are still so many obstacles! Ann Waldo recently introduced me to one of these.
A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, these patients’ access rights surprisingly do not include lab test results – one of the types of medical records that people are most likely to find urgent and useful. Due to the interaction of HIPAA (the Federal medical privacy law), CLIA (a Federal laboratory regulatory law), and state laws, patients can only get direct access to their their test results from labs in a handful of states.
A recent New York Times story highlighted just how much pain and suffering can be caused by this inability to get access to your own lab results.
In 2011, the Department of Health and Human Services put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. This Rule is still waiting to be finalized. In hopes of breaking the logjam, O’Reilly Media and a variety of other players have written a consensus letter that voices our whole-hearted support for that proposed Rule and encourages the Federal government to finalize it promptly.
We’d love to invite you to join us in signing this letter.
Patients’ rights should include direct access to their lab results, just like all their other medical records!