Bazelon Center on Congr. med-privacy legislation

[Peter Marshall <techdiff@ix.netcom.com>]

1. Congressional Action Stalled

Congress is not likely to act this year on medical records privacy
legislation. However, members of key House and Senate committees are
continuing to work through some of the issues and to introduce legislation.
In the Senate, both Senator Patrick Leahy (D-VT) and Senator James Jeffords
(R-VT) have introduced important bills. In the House, Congressman
Christopher Shays (R-CT), a member of one of the committees that will be
responsible for privacy legislation, has also developed a bill.

Senator Leahy's Proposal

Senator Leahy's proposal, S. 1368, introduced on November 4, 1997, is the
strongest in protecting consumer privacy and granting consumers access to
their own records (with the right to make corrections or additions). The
Leahy bill:

   + Requires safeguards to ensure privacy of medical information on the
     part of health care providers, health insurance plans, public health
     authorities, employers, researchers, law enforcement officials and
     others who have access to records.

   + Requires that individuals have prompt access to their own record and
     the right to amend it.

   + Specifies how health care entities must notify individuals of their
     rights and establishes rules for ensuring that individual consent to
     release of information is truly informed consent.

   + Limits any use of disclosed information to only the purposes for which
     it was disclosed and prohibits those who receive protected information
     from passing it on to others.

   + Allows segregation of particularly sensitive portions of the record,
     such as psychotherapists' notes, and then permits greater restriction
     on disclosure of this information.

   + Retains state law, when state law is more protective of privacy or
     allows greater access to one's own records.

Senator Jeffords' Proposal

Senator Jeffords recently introduced a bill, S. 1921, which is not as strong
as Leahy's bill but still stronger than many other proposals under
discussion. S. 1921 would:

   + Retain state law when it is more protective of privacy or allows
     greater access to one's own records.

   + Require health plan operators and health care providers to secure the
     consumer's authorization to disclose his or her health information.

   + Permit plans to require authorization in order for the individual to
     participate in the health care plan. If an individual fails to sign the
     disclosure, he or she may be terminated from the plan.

   + Limit use of information to the purpose for which it was disclosed and
     requires those who receive protected information from passing it on to
     others.

   + Allow health care providers to deny an individual the right to access
     his or her medical records if the provider believes that the disclosure
     would cause "substantial mental harm."

   + Fail to allow segregation of psychotherapists' notes, thus allowing
     health plans to demand these detailed documents for payment purposes.

Rep. Shays' Proposal

On the House side, Representative Christopher Shays (R-CT) has introduced
H.R. 3900, which would:

   + Retain state law regulating information concerning an individual's
     mental health status.

   + Permit disclosure of information, without requiring consent, for
     purposes of treatment and payment of providers of services.

   + Prohibit negligent or intentional disclosure of individually
     identifiable health information without authorization, but permit plans
     to require authorizations from consumers who wish to participate in the
     plan.

   + Penalize providers and plans if they fail to have written policies on
     complying with requirements for medical records privacy.

   + Fail to provide any incentives for health plans to strip identification
     from their records, thus leaving patients unprotected in many instances
     from disclosure of their medical information.

The Bazelon Center is continuing its work with congressional staff to secure
the strongest possible protections of privacy for medical records. The
highest priorites are: 1) ensuring that a federal bill does not pre-empt
stronger state mental health privacy laws; 2) including language to permit
segregation of psychotherapy notes (which would not then be shared without
the individual's specific consent); and 3) permitting equal access to their
records for individuals with mental and physical illnesses.

2. Letter to Senator Jeffords on Access to Records

A coalition of national organizations, organized by the Bazelon Center, sent
the following letter to Senator Jeffords, Chairman, Senate Labor and Human
Resources Committee, on the issue of access to one's own records.

     Dear Mr. Chairman:

     The following comments are forwarded to you by the mental health
     consumer, provider and advocacy organizations listed at the end of
     this letter, all of which are concerned about the issue of access
     for individuals receiving mental health services to their own
     records.

     Currently, S. 1921, Section 101(a) has strong language regarding
     an individual's right to inspect and copy their protected health
     information. However, Section 101(b)(1) provides an exception
     which allows covered entities to refuse inspection or copying of
     protected health information if it "determines that the disclosure
     of the information could reasonably be expected to endanger the
     life or physical safety of, or cause substantial mental harm to,
     the individual who is the subject of the record." The undersigned
     organizations believe that this exception, as currently worded, is
     overly broad and would provide covered entities with unfettered
     and unnecessary discretion to deny people the right to inspect and
     copy their own mental health records.

     Given the dynamics of our health care industry and the explosion
     in the use of technology which will greatly facilitate the
     legitimate sharing of medical information, it is absolutely
     essential that individuals be permitted to know what information
     about their medical condition is being distributed through health
     care networks. Despite the various provisions in S. 1921 to
     protect health information, the bill nonetheless recognizes the
     various legitimate needs of certain parties to such information,
     thus allowing mental health records to be shared among providers,
     between providers and payors, with health plans and employers,
     researchers, law enforcement officials and various oversight
     agencies. It is inconceivable that among such a large number of
     legitimate users of health information it will be possible to
     fully prevent inappropriate disclosures.

     The disclosure of information concerning an individual's mental
     health status-even in appropriate circumstances-is particularly
     sensitive, as S. 1921 already recognizes by stipulating that the
     federal bill will not preempt state laws in this area. For this
     reason, it is especially important that the information be
     accurate; the potential for very significant harm exists if the
     information is misleading, includes opinions which cannot
     withstand scrutiny or information which is completely inaccurate.
     There have been a number of incidents of just such problems.

     The organizations below support full access to records for clients
     of the mental health system, which is the norm in many mental
     health systems today. For example, we are aware that several
     states (Kentucky and Michigan in particular) require full
     disclosure of mental health records on the same basis as any other
     part of the medical record or at least have no provision in law
     that would state otherwise. (The Michigan statutory language is
     attached.)

     Furthermore, in a significant ruling, a U.S. District Court in
     Florida (Doe v. Stincer) found that a Florida statute requiring
     medical facilities to release all medical records to former
     patients upon their request, but permitting the facilities to deny
     requests for mental health records violated Title II of the
     Americans with Disabilities Act (ADA). The court found that the
     defendants claim that patients would provided access to their
     medical records but only when treatment professionals determine
     that such access would not undermine their treatment was "not only
     unsupported by the facts in the record, it is insufficient as a
     matter of law." The Florida statute, the court found, "creates a
     barrier to access that discriminates against all individuals who
     receive treatment for any mental or emotional condition."

     The use of the phrase "substantial mental harm" in S. 1921 as
     justification for failing to share the record allows a single
     professional to subjectively and arbitrarily deny access. We
     believe this is in conflict with Title II of the ADA. Furthermore,
     the bill includes no definition of "mental harm," which could be
     very broadly interpreted. There are also no procedure for any
     independent review of such decisions. Moreover, the bill does not
     specify that the determination of "substantial mental harm" be
     made by the individual's treating professional.

     We have, under separate cover, recommended that the Committee
     amend S. 1921 to allow segregation of psychotherapy notes.
     Assuming that proposal is adopted, providing access to the
     official medical record would not entail providing access to
     psychotherapy notes. Thus, we believe the phrase "or cause
     substantial mental harm" should be deleted from Section 101(b)(2).

     We appreciate your willingness to consider our concerns.

     Sincerely,

     Chris Koyanagi, Dir. of Legislative Policy
     Bazelon Center for Mental Health Law
     Washington, D.C. 20005

     ON BEHALF OF:
     American Counseling Association
     Bazelon Center for Mental Health Law
     National Alliance for the Mentally Ill
     National Association of Protection and Advocacy Systems
     National Council for Community Behavioral Healthcare
     National Mental Health Association

Michigan Statute on Individual Access to Records:

For case record entries made subsequent to March 28, 1996, information made
confidential by this section shall be disclosed to an adult recipient, upon
the recipient's request, if the recipient does not have a guardian and has
not been adjudicated legally incompetent. The holder of the record shall
comply with the adult recipient's request for disclosure as expeditiously as
possible but in no event later than the earlier of 30 days after receipt of
the request or, if the recipient is receiving treatment from the holder of
the record, before the recipient is released from treatment.

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Bazelon Center for Mental Health Law - chrisk@bazelon.org