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NAMI Letter to The Honorable Tommy G. Thompson Regarding the Final Privacy Rule, April 8, 2001

*Note:  In December 2000, President Clinton issued final rules creating uniform national standards governing the privacy of electronic medical records.  While not perfect, NAMI supported the final rules as achieving a proper balance between protecting medical privacy and allowing for the effective flow of information for purposes of clinical treatment, administration and oversight.  After assuming office, President Bush delayed implementation of a number of rules issued during the final days of the Clinton Administration, including the medical privacy rules, pending further review.  In March, 2001, Health and Human Services Secretary Tommy Thompson, responding to concerns that the privacy rules impose too great a burden on healthcare providers and other segments of the healthcare community, announced that the privacy rules would likely be modified somewhat.  

On April 8, 2001, NAMI submitted a letter to Secretary Thompson urging that there be no weakening of the final rule issued by the Clinton Administration.  A copy of this letter is attached.  Questions about these rules or about NAMI's comments should be directed to Ron Honberg,, or Darcy Gruttadato,"

March 30, 2001

The Honorable Tommy G. Thompson
Secretary, U.S. Department of Health and Human Services
Attention: Privacy 1
Room 801
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

RE:            Comments on Final Privacy Rule

Dear Mr. Secretary:

On behalf of the National Alliance for the Mentally Ill (NAMI) and its 220,000 members nationwide, I am writing to urge that there be no weakening of the final rule on the privacy of individually identifiable health information (“privacy rule”) published on December 28, 2000.  Although the final privacy rule may not be perfect, NAMI believes that it strikes a proper balance between protecting medical privacy and allowing for the timely and efficient communication of medical information for purposes of clinical treatment, administration and oversight.  

NAMI is a national, grassroots organization dedicated to advocacy, education, research and support in behalf of persons with severe mental illnesses (schizophrenia, manic-depressive illness, major depression and others) and their families.  Persons with severe mental illnesses are very vulnerable to discrimination stemming from societal stigma and lack of understanding surrounding mental illnesses.  Therefore, we strongly believe that protections must be in place to ensure that sensitive information about a person’s psychiatric treatment is not inappropriately disclosed to those who have no need or right to such information.   At the same time, we recognize that good clinical outcomes are enhanced by the smooth and efficient flow of medical information among clinical treatment providers.

On February 14, 2000, NAMI submitted extensive comments on the then proposed federal standards on medical privacy.  As our recommendations at that time remain applicable today, we are not providing an extensive analysis of the final rule in this letter.  There are several features of the final rule that I wish to comment on briefly.

Consent for treatment, payment and health care operations:

In our comments on the draft rule, we strongly recommended that the final rule require health care providers to obtain consent from patients for the use or disclosure of their personal health care information.   We are pleased that the final rule has incorporated this requirement.  We believe, in view of the multiple levels of scrutiny that personal health records are likely to receive between treatment and payment, that this is the best way to ensure that patients retain some control over their own health care information.   However, we are disappointed that this requirement was not extended to other covered entities, such as health plans.      

Disclosure to next-of-kin:

NAMI is pleased that the final rule allows covered entities to disclose protected health information to next-of-kin and other family members unless the individual who is the subject of this information specifically objects.  Family members frequently function as caregivers for their loved ones with mental illnesses and need essential information about diagnosis, treatment plan, medications and side effects, prognosis, community resources, and other such information to function in this capacity.   Yet, family members are frequently denied this information under the ruse of confidentiality.  The final rule will hopefully have a positive impact in affording family members access to the information they need to help their loved ones with mental illnesses.

Right to access and amend protected health information:

NAMI strongly supports the provisions in the final rule giving individuals the right to see, copy, amend and inspect their own health information.  We believe that consumers own their personal health records, especially those parts that include individual identifying information, while providers and health plans are custodians of these records.  Therefore, consumers should, as a general rule, have free and open access to their own records for purposes of inspection and copying.

However, we are disappointed that the final rule creates an exception to this requirement for psychotherapy notes.  We understand and support the segregation of psychotherapy notes from the general health records for purposes of sharing information for treatment, payment or health care operations.  However, we do not understand the rationale for denying consumers access to their entire health records.  Affording consumers access to  all aspects of their personal health records is particularly important because the final rule requires disclosure of psychotherapy notes without consent to medical students or trainees (164.508(a)(2)(B), and to the Secretary of HHS to determine a covered entity’s compliance with the rule (164.502(a)(ii).  Additionally, the final rule allows disclosure of personal health records for health oversight activities (164.512(j)(1)(i) and to prevent or lessen a serious or imminent threat to the health or safety of a person or the public (164.512(j)(1)(i). 

Law Enforcement:   NAMI is disappointed that the final rule does not require law enforcement officials to obtain a warrant or court order in order to obtain personal health information about an individual.  The lax standard contained in the final rule is inconsistent with other federal privacy statutes governing video records, cable records, or educational records.  We believe that the standards governing access to personal health information should be at least as strong. 


While we have some concerns, NAMI generally supports the final medical privacy rule published in December, 2000 and therefore urges that the rule be adopted without further delay.   We stand ready to work with you to implement rules that are balanced and fair to all stakeholders.   Thank you for affording us the opportunity to submit comments.  Please feel free to contact me at 703-524-7600.


Ronald S. Honberg
Legal Director