•   over 7 years ago

Unethical Contest

This contest is deeply problematic.
Either you are promoting the notion of patient access, which is wonderful, or you are promoting @#$% health data standards, which is unethical.
The blue button initiative was a good intitiative because it allowed greater access. It made that possible by ensuring that access to patient data did not have to wait for the VA to create a download that conformed to the still-forming XML standards that make true interoperability possible.
But now you are promoting the format as something that should be integrated into other EHR systems. That is unacceptable.
Meaningful use requries that doctors allow patients access to their health record summaries using CCR or CCD. Both of those standards can easily be translated to printable reports that are very readable. Meaningful use -also- requires that patients be provided a summary in a printed form. The simplest way to do this is just to have onsite printing of the CCR or CCD reports.
Blue Button data format is not as readable as a summary printout, and is not as parseable as XML. It is the worst compromise between human and computer readability. No clinician should ever make a clinical decision based on the content of a Blue Button download. The data is simply not rich enough to transfer into another health record or PHR. Essentially that makes the blue-button data format standard an FYI-only use case.
The innovation of Blue Button is to not let standards compliance get in the way of access. For this reason the DOD and the VA use of the Blue Button format should be applauded! But promoting it as an alternative process to a process that supports fundamental data reuse and is -already- required by meaningful use is unethical.
I formally request that you withdraw this contest, or make it clear that a CCR/CCD/printable report download meets the requirements of the contest.
-Fred Trotter


  •   •   over 7 years ago

    Neither CCR or CCD are human readable. BlueButton is a huge benefit to both patients and doctors.
    The very complex XML formats you praise are a significant barrier to entry for innovators and have yet to prove themselves as a solid foundation for interoperability. In the real world, authoritative medical records have to be signed by the service provider and their content clearly understandable from a consent perspective by the patient. The coding systems need to be non-proprietary, free and open-source friendly. The data model needs to help keep redundancy in check as entries accumulate to the point of making a "summary" impractical without human intervention to deal with trivial merges. Some folks are now asking if interoperability would be better served by JSON instead of XML. PCAST is focusing on metadata rather than the XML itself.
    BlueButton is essential to patient engagement, empowerment and interoperability and this challenge is a huge step forward in promoting access and portability as originally promised by HIPAA.
    -Adrian Gropper MD

  • Moderator   •   over 7 years ago

    Dr Gropper:
    We think you have it exactly right.  The idea behind this contest is to help doctors sponsor Blue Button PHRs so their patients can download their own data in the simplest possible way. 
    ASCII can be read, saved, and printed on any computer, anywhere, without special software.  .pdf readers are available to anyone -- for free.  
    There are way more complicated ways of moving health data -- and you and Fred mention several of them.  If one of those protocols can actually achieve the goals of allowing patients to download their health data safely, securely, simply and for free -- great!  That protocol can and should compete with the ASCII and .pdf which more than 300,00 Americans now use with their Blue Button downloads.
    Thanks for your thoughtful comments.  

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