No-brainer alert: sign this now! O’Reilly letter on “give us our lab data”!

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.
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Go do it now!

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Posted in: policy issues | reforming hc | trends & principles | Why PM

 

 

Comments

12 Responses to “No-brainer alert: sign this now! O’Reilly letter on “give us our lab data”!”

  1. Joanne E Mandel says:

    This is information about me and my health. I should have access to it with out question or restriction.

  2. Hugo Campos says:

    Done. Signed and shared.

  3. Bill Raynovich says:

    Done. Rock on!

  4. I am with you! Thank you for all the hard work!

  5. Bill Long says:

    Signed! Thank you!

  6. [...] records (it ought to be quicker than that … some day). In some states now, and in all states sometime soon (we hope), we can get copies of our lab results as soon as they are available to our [...]

  7. [...] records (it ought to be quicker than that … some day). In some states now, and in all states sometime soon (we hope), we can get copies of our lab results as soon as they are available to our [...]

  8. This is finally coming to pass. So proud of our work together on this Ann, and your help as we composed that initial letter (while you were on vacation in Italy!) Here is original letter: http://healthdatarights.blogspot.com/2009/10/consensus-letter-to-office-of-civil.html

  9. [...] Alice Leiter and Deven McGraw on The Health Care Blog. That post and other communications (e.g. an on line petition) have tried over the past two years to hurry this thing up. I don’t think that any of these [...]

  10. [...] Alice Leiter and Deven McGraw on The Health Care Blog. That post and other communications (e.g. an on line petition) have tried over the past two years to hurry this thing up. I don’t think that any of these [...]

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