Quick, quick, do this now! Go add your signature to the hundreds who have already signed – this is about getting us access to our lab results, the same as any other health data!
How important is this? Here’s a video of SPM member Ann Waldo discussing it with awesome internet guru Tim O’Reilly. Yeah, Tim O’Reilly (of O’Reilly media, creator of the term “Web 2.0,” and all kindsa things) says it’s important enough to host this campaign on his site. “Gimme My Damn Data” goes large!
Go do it now - they want signatures collected by tomorrow, Oct. 24. (I’m a slacker for not posting this earlier.) Then you can come read the rest of this here, or more on the signature page.
Update 90 minutes later: Holy crap, I just watched that video – it’s a GOLD MINE of the broader issues at stake! A virtual tutorial on the new world we want, of a new platform for our healthcare, powered by the data we want. (The video stalls at 5:47 – something’s wrong – but the part I could see is still gold.) I want a transcript of this! I’ll embed it here:
An excerpt from the letter:
Summary of Letter Supporting the Proposed Federal Rule to Expand the Rights of Patients to Access Their Test Results
Patients need quick, convenient access to their medical records in order to better manage their health. Patients’ rights should include direct access to their lab results, just like all their other medical records.
In 2011, HHS put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. Today, 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. The proposed Rule would give patients that right in all 50 states. This consensus letter voices our whole-hearted support for that proposed Rule and encourages the federal government to finalize it promptly.
A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, patients’ access rights do not include lab test results. Lab test results are in a uniquely restricted category compared to other health information, which impairs patients’ ability to see, save, use, and share their own test results.