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Document 78 of 124.

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JULY 15, 1999, THURSDAY

SECTION: IN THE NEWS

LENGTH: 2687 words

HEADLINE: PREPARED TESTIMONY OF
DR. PAUL S. APPELBAUM
PROFESSOR AND CHAIRMAN
DEPARTMENT OF PSYCHIATRY
UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL
BEFORE THE HOUSE COMMERCE COMMITTEE
HEALTH AND THE ENVIRONMENT SUBCOMMITTEE
SUBJECT - H.R. 1746

BODY:

Introduction
Mr. Chairman, I am Paul Appelbaum, M.D., testifying on behalf of the American Psychiatric Association (APA), a medical specialty society, representing more than 40,000 psychiatric physicians nationwide. I serve the APA as Vice-President and I am also Professor and Chair of the Department of Psychiatry at the University of Massachusetts Medical School. I would like to thank Chairman Bilirakis, Ranking Member Brown, and members of the Subcommittee for the opportunity to testify today.
Mr. Chairman, we greatly appreciate your interest in passing medical records privacy legislation. We also appreciate the work of Mr. Greenwood, Mr. Waxman, and Mr. Markey, as well as several Republican and Democrat members of the Committee who fought to improve the privacy provisions of HCFA's recent OASIS medical information regulation.
As changes in technology and health care delivery have outpaced the statutory, common law, and other protections that traditionally have ensured patient confidentiality, the level of confidentiality enjoyed by patients has eroded dramatically. I greatly appreciate your efforts to seize this valuable opportunity to protect and restore needed confidentiality protections.
The Need for Federal Legislation
I believe medical records confidentiality is one of the most important issues to come before the Subcommittee this year. Our ability to find a new job, earn a promotion, obtain insurance, our family and social relationships, the quality of health care, and medical research breakthroughs can all be enhanced or tragically jeopardized by medical records confidentiality legislation. Our medical record, when it relates to conditions as varied as high blood pressure, communicable diseases, Alzheimer's disease, mental illness and substance abuse, domestic violence, sexual assault information, terminal illnesses, HIV/AIDS, cancer, eating disorders, sexual function or reproductive health issues, as well as many other conditions, is highly sensitive.
But whether or not we are affected by these illnesses, medical records privacy issues affect us all. Today's comprehensive medical assessments and wellness questionnaires can contain questions about patients' sexual behavior, social relationships, state of mind, and psychiatric status - even if patients are not receiving medical treatment relating to these issues. The forms can also contain extensive personal and financial information.
The need for privacy legislation is compelling. In 1996, a federally appointed panel of experts, the National Committee on Vital and Health Statistics, stated that our country faces a health privacy crisis.
And across the political spectrum, broad support exists for action on this issue. Many conservatives, including Phyllis Schafly, have decried the stealth assault on medical records.
Likewise, liberals and civil libertarians have been fighting to secure basic protections to safeguard citizens from unjustified police seizure of their medical records. Finally, there has been bipartisan concern that led to the suspension of any implementation of a national patient identifier and the limitation of the Health Care Financing Administration's recent medical information collection regulation, dubbed OASIS. Thus, it is clear that Americans of all political persuasions want to keep their personal medical information confidential. We hope that in the current debate on medical records privacy, bipartisan support can develop for enacting meaningful medical records privacy legislation into law. Confidentiality is a Requirement for High Quality Medical Care
Common sense, the experience of physicians and patients, and research data all show that privacy is a critical component of quality health care. The sad fact is that the health care system has, on occasion, not earned the trust of patients, and many patients do not trust the system to keep their information confidential. In many cases, the result has been that physicians are not able to provide the best possible quality care nor reach many individuals in need of care.
Some patients refrain from seeking medical care or drop out of treatment in order to avoid any risk of disclosure. And some simply will not provide the full information necessary for successful treatment. At other times, physicians are approached by patients who ask us not to include certain information in their medical record for fear that it will be indiscriminately used or disclosed. The result of all these behaviors resulting from patients' reasonable concerns is unfortunate. More patients do not receive needed care and medical records' data that we need for many purposes, such as outcomes research, is regrettably tainted in ways that we often cannot measure.
The solution is not to take short cuts that will further deprive patients of their rights. Instead, we must enact into law meaningful medical records privacy legislation based on the voluntary informed consent of patients and reliance upon the fullest possible use of deidentified and aggregate patient data. In this way the full advantages of patient privacy as well as the benefits of new medical technology can be harnessed.
Informed, voluntary, and non-coerced patient consent prior to the use and disclosure of medical records should be the foundation of medical records confidentiality legislation. As a general principle, we believe that the American Medical Association's position -- that patient consent should be required for disclosure of information in the medical record with narrowly drawn and infrequent exceptions permitted for overriding public health purposes -- is eminently reasonable.
The Special Sensitivity of Mental Health Information and the U.S. Supreme Court's Jaffee Decision
Patients often refrain from entering psychiatric treatment because of concerns about confidentiality. Not only do patients refrain from telling family members and close friends the information they share with their therapist, but some may not even tell their family members that they are receiving mental health treatment. Often, if the information were disclosed to a spouse or an employer it might jeopardize their marriage or employment. But even the privacy protection afforded to psychotherapy notes has eroded so much in recent years that many psychiatrists and other mental health professionals have stopped taking notes or take only very abbreviated notes. Without the very highest level of confidentiality, patients receiving mental health services will be less likely to enter treatment and less likely to remain in treatment. Worse yet, if confidentiality is not protected, the treatment they receive will usually be less effective.
For these and other reasons, the U.S. Supreme Court recognized the special status of mental health information in its 1996 Jaffee v. Redmond decision.

The court held that Effective psychotherapy depends upon an atmosphere of confidence and trust disclosure of confidential communications made during counseling sessions may cause embarrassment or disgrace. For this reason the mere possibility of disclosure may impede the development of the confidential relationship necessary for successful treatment. It is also worth recognizing that the extent of mental illness is widespread. According to the World Health Organization mental illnesses account for four out of ten of the leading causes of disability. I urge members of this committee not only to protect the letter of the Jaffee decision but indeed to protect its spirit by including appropriate provisions in the legislation.
Provisions Needed in Congressional Legislation
It is not my intention to provide a detailed analysis of each bill before the Subcommittee but rather, I would like to recommend several key provisions that we believe should guide the Subcommittee in its deliberations, and we would be happy to provide the Committee with additional recommendations as well.
Preemption. I believe the most important medical records privacy issue before the Committee is to insure that stronger state medical records privacy laws are preserved and that states' ability to enact stronger medical records privacy laws are preserved. States have adopted valuable protections for patients, including laws limiting the disclosure of pharmacy records and laws blocking insurers' access to verbatim psychiatric notes. States are also actively considering numerous additional proposals. In fact, the National Council of State Legislatures estimates that a total of 56 medical records confidentiality bills have passed through at least one chamber of a state legislature. We must not block states' efforts to protect citizens' medical privacy. We recommend that the provisions in H.R. 2470 be modified to adopt a floor preemption approach as contained in the Condit-Waxman bill.
Consent. APA believes three principles should govern those sections of the legislation concerning authorization and consent for disclosure. First, patients themselves should decide whether or not personal health information is disclosed. Consent before use and disclosure of medical records is critically important and this time-tested approach should be preserved and strengthened in order to remain meaningful in the changing world of health care delivery. In general, whatever problems may now exist with confidentiality of health information are derived from our failure to observe this principle. No one is in a better position than patients themselves to identify sensitive information and to determine to whom it ought not to be revealed. Those who would alter this traditional approach have failed to justify such a radical change.
Second, identifiable personal health information should be released only when deidentified data is inadequate for the purpose at hand. Third, even when consent has been obtained, disclosure should be limited to the least amount of personal health information necessary for the purpose at hand. This is consistent with our recognition of the importance of protecting medical privacy.
These principles have implications for some of the major policy questions regarding authorization of disclosure. For patients to retain meaningful control over personal health information, prospective consent for routine disclosures of identifiable information should be largely limited to information needed for treatment and payment purposes. Other health care operations can usually be accomplished with deidentified data. With such a provision, a strong incentive will exist for the use and further enhancement of technology to perform a wide array of administrative functions.
We are extremely concerned because H.R. 2470 reverses the time-tested principle of consent before disclosure. Many patients will not even be aware that their most sensitive information is being used or disclosed for a host of purposes far beyond treating their illness or paying for the service. Were this legislation to be enacted into law, we fear that gradually patients would learn how little control they have over disclosure of their most personal information. As a result, many patients would refrain from providing their physician with the full information about their medical condition or they would refrain from obtaining care.
Unlike each one of the other three Republican bills before the Congress, i.e. Senate bills introduced by Senator Robert Bennett (R- UT) and Senator James Jeffords (R-VT) and a House bill introduced by Representative Chris Shays (R-CT) the Greenwood bill eliminates the principle of current law requiring consent before disclosure. We strongly urge the Committee to adopt an alternative approach based on the aforementioned principles.
Health Care Operations. In particular, the APA is also very concerned by the definition of operations in H.R. 2470. Entities providing health care can use and disclose this information for operations purposes, i.e. many purposes not directly related to treating a patient or performing payment or reimbursement functions. Some of the terms that are used to define "operations" are quite vague and broad and could endanger patient privacy. Do we really want to permit patients to be terminated from their health care coverage because they don't want their personal records to be used for largely commercial functions that can be performed with aggregate data? Employee Protections. Millions and millions of Americans have great concern about the threat to confidentiality of their medical records due to employer access. Whether it is idle gossip by individuals with access to medical records, employer review of identifiable medical records data, or supervisors' inappropriate interest in the personal lives of their employees we must protect employees right to medical records privacy. Wouldn't most people want to decide if anyone in their company, not to mention their supervisor, would know if they obtained medical care from a psychiatrist, from a cardiologist, from an obstetrician/gynecologist, or from an oncologist?
We believe that the strong, explicit protections are needed in this area such as the provisions included in several bills, most notably those introduced by Senator Robert Bennett (R-UT) and separate legislation introduced by Representatives Gary Condit (D-CA) and Henry Waxman (D-CA). Loopholes in H.R. 2470's definition of health plan and protected health information also need to be closed so that employees can be assured of adequate medical privacy protections.
Needed Protections for Particularly Sensitive Medical Information.
As indicated above, especially sensitive information, including mental health information needs to receive a very high level of protection. Indeed, the U.S. Supreme Court itself in its Jaffee decision recognized that additional privacy protections, above and beyond those afforded to other health information, are needed to insure effective psychiatric care. APA believes that in order to promote high quality medical care and patient privacy, the Congress should pass legislation that provides a level of protection high enough so that no class of information needs additional protections. However, in the event that the Congress proceeds with legislation that does not meet this test, strong additional privacy protections will clearly be needed for mental health information.
Medical Records Provisions of H.R. 10, Financial Services Modernization Legislation.
Any discussion of current medical records legislation involving the House Commerce Committee must also focus on the damaging medical records provisions included in H.R. 10, the Financial Services Modernization bill soon to be discussed before a House-Senate Conference Committee. Despite the good intentions that led to the adoption of these provisions, we remain extremely concerned that this legislation will hurt, not help, the cause of medical records privacy, both because of the legislation's likely preemption of state privacy laws and its lack of basic medical records privacy provisions contained in all the medical records privacy legislation before the Congress.
We attach a letter signed by 40 physician, provider, patient, and other organizations opposing these provisions. Groups opposing these provisions include the American Medical Association, the American Association of Family Physicians, the American Lung Association, the Service Employees International Union, and the American Federation of State, County and Municipal Employees.
Conclusion
As physicians, we take an oath first stated by Hippocrates that, Whatsoever things I see or hear concerning the life of men, in my attendance on the sick, I will keep silence thereon, counting such things to be as sacred secrets.
In order to make sure that doctor-patient confidentiality continues to protect patients in the new millennium, I strongly urge the Committee to provide the highest possible level of confidentiality in your legislation.
We thank you for this opportunity to testify, and we look forward to working with the Committee on these important issues.
END

LOAD-DATE: July 21, 1999

Document 78 of 124.


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