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Re: Feb 2 AHIMA meeting on S. 1360

  I want to comment on Jamie's notes on the Feb. 2 meeting.  The
  notes display Jamie's standard techniques of innuendo and implied
  unfairness.  I will offer a few examples.
  Jamie suggested twice in his notes that the chairman (me) moved
  the discussion along when there was "opposition to closing out a
  topic."  There were five sections of the bill on the agenda.  All
  were discussed.  The meeting ended shortly after its announced
  ending time of 12:00 noon.  The only way that this is possible is
  to stop discussion at a suitable point and move on.  That is the
  role of the chairman.  No one else complained, and several people
  commented afterwards that they thought the meeting was well run.
  Jamie did not tell you that he dominated the meeting, speaking
  more than any other participant.  He had plenty of opportunity to
  say what he wanted.  Most of his ideas attracted little support.
  Jamie's description of the end of the meeting is similar.  He
  wrote that I announced that "it was decided" that the next
  meeting would begin with Section 201 of the bill.  Jamie's
  suggestion here is that there is some unfairness in this process. 
  In fact, there is an announced agenda for all of the meetings
  that has been in circulation from the first meeting.  At the
  first meeting, changes to the agenda were made in response to
  comments, some from Jamie.  If there is something wrong with
  following an announced agenda, I don't know what it is.  
  Some other comments and observations:
  Jamie's description of my comments on the "information about
  others" exception to patient access is not complete or accurate. 
  There is an exception for information about others in the Condit
  bill (H.R. 435) but not in the Bennett bill (S.1360).  I pointed
  this out and suggested that it was an important exception for
  several reasons, including genetic information and group therapy. 
  The section was not discussed at great length at the meeting. 
  Some recognized the importance of the issue.
  Jamie did not report my comment that the Bennett bill did not
  include an exception for records compiled in anticipation of
  litigation, a well recognized exception to access.
  Jamie quoted Gary Friend as drawing a comparison between the Fair
  Credit Reporting Act and the Bennett bill.  Jamie's comment here
  reflected his continuing attempt to suggest that there is some
  relationship between the FCRA to the medical bills, with the
  implication that this is a terrible thing because the FCRA is so
  flawed.  The FCRA is flawed, but I can testify from direct
  experience that the FCRA was not used as a model for the Condit
  bill.  The FCRA was not consulted during the drafting process,
  and there was no attempt to make the bill look anything like the
  FCRA.  The Bennett bill appears to have been mostly derived from
  the Condit bill so the same statement is likely to be true for it
  as well.  Of course, there are similarities between all privacy
  bills because they all tend to contain the same elements of fair
  information practices.  If you don't have any specific evidence
  that it is anyone's goal to make the medical bill be another
  FCRA, then get off this point Jamie.
  Jamie offered two proposals.  One related to his concept of a
  custodian.  However, Jamie was unable to describe precisely how
  this would work.  For a patient with multiple doctors, hospitals,
  labs, and other care providers, he did not explain how anyone was
  to determine who was the custodian for any particular patient at
  any particular time.  People tend to have dozens of providers in
  the course of their life who share treatment records routinely. 
  Who is the custodian and how is anyone supposed to know.  This is
  not a trivial problem.  
  Jamie failed to respond to the expressed concern that the
  custodian's record of subsequent uses and referrals would
  actually be a new privacy-invading database that does not exist
  today.  It could be exploited by the custodian or used as a
  surveillance device by law enforcement, for example.  Further, if
  you read Jamie's reported answer to Gary Friend's comment, you
  will see that it makes no sense.  His response to the concern is
  to provide notice to the patient of a disclosure that the patient
  expressly authorized.  Why?   
  A second proposal involved annual reporting by trustees on the
  number of records accessed.  My comment on this proposal was that
  we already know that many users of health records obtain large
  numbers of records.  For example, we spend billions of tax
  dollars annually on health research, and a good deal of it
  involves access to health records.  I don't find it very useful
  to spend money to determine precisely whether the number of
  records accessed is one million, five million, or ten million. 
  It is unquestionably a large number.  To collect useless
  statistics, and pay for the proposed independent audits to verify
  their accuracy, seems like a waste.  We should limit all
  disclosures to the minimum necessary to accomplish a legitimate
  purpose, and that is what the bills attempt to do.  I don't think that 
  Jamie's statistical proposal is useful, but at least it is coherent and 
  understandable.  I can't say the same for the custodian notion.
  This message is long enough already so I will not go on.  You get
  the idea.
  + + + + + + + + + + + + + + + + + + + + + + + + +
  +   Robert Gellman          rgellman@cais.com   +
  +   Privacy and Information Policy Consultant   +
  +   431 Fifth Street S.E.                       +    
  +   Washington, DC 20003                        + 
  +   202-543-7923 (phone)   202-547-8287 (fax)   +
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