[Sigmed-l] Opening Medicare Data for Research - new legislation

[Catherine Arnott Smith]

Leonard Davolio wrote:
>  The greatest de-identification software is
> still not capable of making anonymous all 17 types of PHI data contained in
> the medical record with 100% accuracy and likely never will be.  And just
> who are "private organizations" and what will the processes be for access
> and handling? I hope this isn't a bill sponsored by and for big pharma but
> the cynic in me can't help but wonder.  In any case, this should be an
> interesting one to follow:
>
> http://www.healthdatamanagement.com/html/news/NewsStory.cfm?articleId=15280
>
>
>   
Thomas.gov should have the bill text in a few days, but at the moment, 
sure looks like this is a quality initiative aimed at letting consumers 
"choose" and "be informed" about their healthcare. The quotations are 
there not because I don't agree these are good goals, but because I 
question how much "choice" really exists even with available "information".

Then there's the other problem--discussed at length at Spring AMIA--that 
the reason hardly anybody has Personal Health Records is that hardly 
anybody has electronic medical records on which to build. So even if the 
data could be hypothetically cleaned up to HIPAA's satisfaction (you are 
right-100% accuracy is impossible)--we're still only going to be looking 
at clinical data that is available digitally, which ain't the medical 
record for most places. (Mayo, Kaiser, Partners in Boston excepted, for 
example).

Now clinical data mining could happen easier than medical record mining, 
but clinical data mining is digging in lots of big silos. So I'm not 
sure what good this all does anybody.

-- 
Catherine Arnott Smith, PhD
Assistant Professor
School of Library and Information Studies
Room 4263 Helen C. White Hall
600 N. Park Street, Madison, WI 53706
Phone: (608) 890-1334
Fax: (608) 263-4849

***
The machine does not isolate us from the 
great problems of nature but plunges us 
more deeply into them.
--Antoine de Saint-Exupery

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Form is never more than 
the extension of content.
--Robert Creely [quoted in C. Olson, 
"Projective Verse", 1950.]