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Feb 2 AHIMA meeting on S. 1360

  February 2, 1996 AHIMA meeting on S. 1360
  These are my notes from today's meeting.  (As usual, other accounts or 
  views are welcome)  Jamie
  The meeting has held at IBM's offices.  It snowed last night, and
  attendance was light.  Bob Gellman announced that "he was asked"
  to chair the meeting.  Bob expressed a desire to keep on a tight
  schedule, and more or less moved things along, even when there
  were some fairly important loose ends, or opposition to closing
  out a topic.   There were no other consumer or privacy groups
  present.  The Bazelon Center for Mental Health Law was
  represented by Leonard Rubinstein.  The AMA and the American
  Psychiatric Association were represented, as were more than a
  dozen industry groups.  The Clinton Administration was
  represented by Dr. Bill Braithwaite from HHS.
  We started the meeting with a brief rehash of a few points about
  INFORMATION.  This is the second about patient access to their
  own records.  I asked if we could further discuss cases where
  certain records, such as mental health treatment notes, were
  treated differently.  I had earlier (last week) asked if it made
  sense to treate differently mental health treatment notes that
  had not been disclosed to ANY other person.  Today Bob Gellman
  discussed two of the exceptions to patient access that were in
  the Condit Bill (HR 435).  These were for Mental Health Treatment
  Notes and "information about others." [note, the language from HR
  435 is given below:]
       (1) MENTAL HEALTH TREATMENT NOTES- The information
       consists of psychiatric, psychological, or mental
       health treatment notes about the individual, the
       trustee determines in the exercise of reasonable
       professional judgment that inspection or copying of the
       notes would cause sufficient harm to the protected
       individual so as to outweigh the desirability of
       permitting access, and the trustee does not disclose
       the notes to any person not directly engaged in
       treating the individual, except with the authorization
       of the individual or under compulsion of law.
       (2) INFORMATION ABOUT OTHERS- The information relates
       to an individual, other than the protected individual
       or a health care provider, and the trustee determines
       in the exercise of reasonable professional judgment
       that inspection or copying of the information would
       cause sufficient harm to one or both of the individuals
       so as to outweigh the desirability of permitting
  With regard to the mental health treatment notes, Bob said it was
  basically a politically motivated provision, made in hopes that
  the psychiatric community would find the bill more appealing.  He
  said that 15 years earlier there had been an exemption from
  patient access for mental health treatment notes.   The Condit
  bill defined mental health treatment records as records that were
  only used for only for treatment purposes.  Leonard Rubinstein,
  myself and others discussed the fact that under the Condit bill a
  fairly large number of persons could have access to your records
  without you having access, probably including nurses.  There no
  so support for the Condit bill language.  Cathy Brady said that
  there had been some work on the issue of mental health treatment
  notes issue at the state level. 
  >From Bob's presentation, it sounded as though parts of the
  "information about others" exemption were not satisfactory,
  particularly with regard to genetic information, but this was not
  discussed at length.
  We then turned to Sec 102 of the bill, the "CORRECTION OR
  and Bradstreet (D&B), representing the IMS subsidiary, said that
  S. 1360 had built upon the lessons from the Fair Credit Reporting
  Act, which regulates credit bureaus (a comment which was not
  entirely reassuring to some).  There was a long discussion about
  this section of the bill.  Thomas Gilligan from the Association
  for Electronic Healthcare Transactions (AFEHCT) [the firms that
  are the "lines" between the boxes in the flow charts], was quite
  unhappy about the burdens on them to correct information that was
  created by others.  He made what I thought was an important
  point.  Right now many of the records that health information
  services firms store are in raw formats, and not easily
  accessible. If they were forced to "database" the records (store
  them in searchable record formats) it would be easier to make the
  corrections, but it would also make it easier to disseminate the
  records, making the data more likely to be disseminated (or
  subpoenaed).  Apparently Mr. Gilligan has been making this point
  for a while, since most persons had heard it before.  There was
  quite a bit of discussion over who should be making "corrections"
  to one's health care records, particularly if it should be anyone
  other than the provider.  It did not seem to me that much was
  In discussing the enforcement of Sec. 102, it seems that one can
  sue under Sec. 302, for $5,000 or actual and punitive damages
  (whichever is greater), or ask the government to bring civil or
  criminal actions against the firm.
  I brought up the issue of pre-empt of a patients rights under
  state or common law.  Some patients have been severely injured by
  errors in their treatment records.  In these cases doctors or
  other providers can be sued, under malpractice or other tort
  claims.  S. 1360 should not immunize providers from damages
  caused by these types of errors.  Bob Gellman said the bill
  should not do that, and he would seek a clarification.
  We then turned to Sec. 103, NOTICE OF INFORMATION PRACTICES. 
  Gary Friend from D&B said that in Germany, patients are given a
  notice of how their records are going to be used, such as for
  research, and given an opportunity to withhold records from a use
  if they object.  He said this was a type of informed consent
  approach.  I wanted the Sec. 103 notice to include a specific
  discussion of how a provider (or other trustee) would respond to
  the Sec. 204-212 exemptions, which are non-mandatory but
  permitted (without permission or often without notice).  I said
  that if patients were told what a provider would do when faced
  with a request for records under the 204-212 exemptions, it would
  allow patients to choose doctors who favored privacy over
  disclosure.  It would create an incentive to have less
  disclosures, through market forces.  I asked for and seemed to
  get an agreement that this was desirable.  No one spoke against
  this proposal.
  Moving right alone, we then turned to Sec. 111, the ESTABLISHMENT
  of SAFEGUARDS section.  Mr. Gilligan from AFEHCT seemed pretty
  happy with this section.  It seemed ok to me too.  (Comments
  welcome on this one).
  The meeting ended in a long and I thought very important
  discussion about Sec. 112, ACCOUNTING FOR DISCLOSURES.  Bob
  Gellman described this a "boiler plate" from the privacy act. The
  basic provision is that: 
       A health information trustee shall create and maintain,
       with respect to any protected health information
       disclosure that is not related to treatment, a record
       of the disclosure in accordance with regulations issued
       by the Secretary. [Sec 112. (a) ]
  The patient has access to this information, if you ask for it. 
  But this is not a simple matter when the accounting for
  disclsoures are held by third parties.  You have to hunt for it,
  moving from one trustee to another, guided by a "trail" of
  disclosure records (one leading to another, in theory).
  I wanted two changes to Sec. 112.  First, I wanted a provision
  that required a type of homing device for disclosures, so that a
  patient could more easily find out who had been given access to
  records.  This is an other example of how I believe a concept of
  a custodian of a record may be useful.  Under S. 1360, records
  can "drift" from one trustee to another, often being transferred
  under the 204-212 exemptions, without notice or consent.  The
  only way to find out who had the records is to go from trustee to
  trustee, following a trail of reports about who had the record. 
  This could take years, and be frustrated by predictable gaps in
  the record trail.   I wanted the information about disclosures,
  like a homing pigeon, to return to the original custodian, so I
  could actually find out who had access.  By making the
  information about who had access practically available (rather
  than just theoretically available), there would be a larger
  disincentive to disseminate records.  This would a greater
  incentive for more privacy.
       NOTE: On November 14, 1995, CPT recommended a new
           Sec. 112 (c), which would required health care
           trustees to provide copies of records of
           disclosures to the person who maintains custody of
           the original copy the protected health care record.
  I also wanted regular statistical reports made to HHS, on how
  often records were disclosed under the Section 204-212
  provisions.  I said we needed this data to figure out what was
  really happening, and that this too would be a safeguard against
  erosions of privacy.  A question was raised about the accuracy of
  the reports, and I suggested that a third party verify (audit)
  the reports.
           NOTE: our November 14, 1995 comments, which I did
           not distribute today, suggested a new Sec. 112 (d):
           "The health care trustee shall provide annual
           statistical reports to the Secretary, in a format
           which is specified by the Secretary, which
           discloses the number of records that are accessed,
           the types of persons or entities who obtain access,
           the sections of the law under which access was
           obtained, and the purposes for which the
           information was used.  The health care trustee
           shall also obtain an independent audit to verify
           the information provided in this report.  The
           Secretary shall make these reports available to the
      Bob Gellman addressed the group to say that in his view, the
  purpose of S. 1360 was NOT to discourage disclosure of medical
  records, and that he was opposed to both suggestions for changes
  in Sec 112.  Bob said the first suggestion would mainly benefit
  the postal service, and the second would mainly benefit the
  accounting profession.  Bob said he saw no value in statistical
  reports about disclosures whatsoever.  
  A discussion then began over the health information services
  (HIS) companies.  Mr. Gilligan said that there would be no audit
  trail for data that was given to a HIS, because they would not
  have the records.   Sec. 112(b) requires that the accounting for
  disclosures be held for seven years (down from 10 in the 
  pre-introduction draft).  The question that surfaced, what happens
  when a record is purged or destroyed.  Do you keep a record of
  the disclosure of the purged record long after the record itself
       Note:  Suppose, for example, that a researcher obtains
       records (identified, and obtained without consent), that are
       further disclosed to a third party (possibly another section
       204-212 entity).  But then the researcher destroys the
       records.  If researcher keeps a record of the disclosures,
       after the records or destroyed, its like keeping the record
       itself, in some cases.  But if it is destroyed, HOW DOES ONE
       FOLLOW THE AUDIT TRAIL?  Indeed, it would be easy to
       "launder" the records through a temporary entity, who
       "destroyed" the records, and the audit trail.
  I observed that we had a problem, because we wanted persons to
  destroy or purge records -- this was a practice that should be
  encouraged.  Thus there was a second reason why the accounting
  for disclosure should be sent back to a custodian of the record.
  Several other points were brought up.  Gary Friend from D&B
  talked about getting a third opinion on a surgical procedure.  He
  didn't want the first doctor to even know about the third doctor
  (three doctors had access to the x-ray.)  I suggested a simple
  solution -- allow notice to the patient (the person seeking the
  3rd opinion in this case) to be a substitute for disclosure,
  since the important thing was to provide a mechanism for a person
  to control access (or at least know about access) to their own
  medical records.  Thus, the trustee could choose to provide
  notice of the disclosure to the patient or the custodian of the
  records, whichever made the most sense.
  At this point, with several rather important loose ends at play,
  Bob Gellman announced that this concluded the Sec. 112
  discussion, because "it was decided" that we would move on (next
  week) to the next topic, Sec. 210, GENERAL RULES REGARDING USE
   James Love, CPT, love@tap.org
   February 2, 1996
  James Love, love@tap.org
  P.O. Box 19367, Washington, DC 20036; v. 202/387-8030; f. 202/234-5176
  Consumer Project on Technology; http://www.essential.org/cpt/cpt.html
  Taxpayer Assets Project; http://www.essential.org/tap/tap.html