Proposed national regulations governing the privacy of patients' medical records would strengthen patients' control over their records and would require individuals and organizations with access to medical information to protect it against misuse or disclosure. However, the regulations cover only records that are either transmitted or maintained electronically and paper printouts created from those records. Records that are maintained only in paper form are excluded.
Released on October 29, the regulations will become final after a 60-day period for public comment that may result in some revisions. They were developed in keeping with a provision in the 1996 Health Insurance Portability and Accountability Act (HIPAA) that required the Secretary of Health and Human Services (HHS) to issue final regulations governing privacy of medical records by February 21, 2000, if Congress was unable to enact comprehensive national regulations by August 21, 1999. Several bills covering privacy protections for medical records have been introduced in Congress, but none have passed.
The regulations reflect the first attempt to protect the privacy of patients' medical records on a national level. However, their reach is limited by a provision in HIPAA that denies HHS the authority to protect all medical records, including those maintained in paper form only. The law also prevents HHS from issuing privacy standards for records that are maintained by other insurers or by employers for worker's compensation purposes.
The regulations do not restrict the use or redisclosure of medical information by so-called "likely recipients," such as researchers, life insurance companies, marketing firms, or administrative, legal, and accounting services. HHS also lacks the authority to provide Americans with the right to take action in court when their medical information is used inappropriately. The Clinton Administration has asked Congress to close these gaps through comprehensive national legislation to ensure that all medical records are protected.
The American Psychiatric Association has criticized the regulations for not going far enough to protect the privacy of medical records, particularly those involving mental illness. APA vice-president Paul Appelbaum, M.D., noted in an APA statement that the Supreme Court has given mental health care unique privacy protections under law. APA also believes that patients should be the primary decision makers about who has access to both their paper and their electronic medical records.
The proposed regulations are consistent with the five key principles that should underlie national health privacy legislation that HHS Secretary Donna Shalala recommended to Congress in September 1997. The principles are consumer control, accountability, public responsibility, boundaries, and security. Key provisions in each area are described below.
Consumer control. Patients would be able to see and get copies of their records and request corrections. They would also have the right to restrict uses of their information. Providers and health plans would be required to give patients a clear written explanation of how they will use, keep, and disclose information and to maintain a history of most disclosures that is accessible to patients. A patient's authorization to disclose information would have to meet specific requirements. A provider or payer generally would not be able to condition treatment, payment, or coverage on a patient's agreement to disclose health information for other purposes.
Accountability. The regulations would impose federal criminal penalties for health plans, providers, and clearinghouses that knowingly and improperly disclose or obtain information under false pretenses, and they would also be subject to criminal liability. Civil penalties would range up to $25,000 per person per year per standard. Criminal penalties would range from one to ten years in prison and up to $250,000.
Public responsibility. The proposed regulations would permit disclosure of health information without individual authorization in certain national priority activities and for activities that allow the health care system to operate more smoothly. These activities are oversight of the health care system, including quality assurance activities; public health; research; judicial and administrative proceedings; law enforcement; emergency circumstances; provision of information to next-of-kin; identification of the body of a deceased person or of the cause of death; use as authorized for government health data systems; facilities' patient directories; processing of health care payments and premiums by banks and other financial institutions; and activities related to national defense and security.
Boundaries. With few exceptions, an individual's health care information would be used for health purposes only. All disclosures would be limited to the minimum information necessary. Disclosures with patient authorization would have to meet standards that would ensure that the authorization is truly informed and voluntary.
Security. Health plans, health care providers, and health care clearinghouses would be required to protect health information against deliberate or inadvertent misuse or disclosures. Security measures and policies would need to be implemented.
The regulations would not limit or reduce other stronger legal protections for confidentiality of health information. Stronger state laws would continue to apply.
A fact sheet and press release about the regulations are available on the Internet at www.hhs.gov/news/press/1999pres/991029a.html.
Medicare spending for mental health, alcohol, and other drug treatment reached $10.6 billion in 1996, accounting for 13.4 percent of expenditures on all behavioral health treatment in the United States, according to a report in Open Minds newsletter. Of the total, $9.6 billion was spent for mental health treatment, $608 million for treatment of alcohol abuse, and $441 million for treatment of other substance abuse.
Almost five million Medicare beneficiaries have mental disorders other than mental retardation. Of this number, 1.3 million are under age 65 and are receiving Social Security Disability Insurance. However, behavioral health expenditures account for only 5 percent of Medicare expenditures, the report said.
The report noted that community mental health centers (CMHCs) are receiving an increasing percentage of Medicare payments. Between 1993 and 1996, payments to CMHCs rose from $60 million to $265 million annually, a 342 percent increase. During the same period, the average payment per beneficiary rose from $1,642 to $6,874, a 319 percent increase.
The report, based on Medicare survey data, was written by Open Minds managing editor Harold Sloves and published in the August 1999 issue. For more information, call the newsletter at 717-334-1329.
Directory of substance abuse programs: An updated National Directory of Drug Abuse and Alcoholism Treatment Programs, containing information on thousands of local treatment programs in each state, was recently released by the Substance Abuse and Mental Health Services Administration. The directory includes a nationwide inventory of substance abuse and alcoholism treatment programs at federal, state, and local levels as well as private facilities that are licensed, certified, or otherwise approved by substance abuse agencies in each state. A free copy of the directory is available from the National Clearinghouse for Alcohol and Drug Information, P.O. Box 2345, Rockville, Maryland 20847; telephone, 800-729-6686. The directory is also accessible on the Internet at www.samhsa.gov.
Stanley research awards: The Research Institute of the National Alliance for the Mentally Ill (NAMI) and the Stanley Foundation have announced 50 new research awards from the Stanley Foundation for the study of schizophrenia and bipolar disorder. The awards, combined with $3 million in second-year awards, total $6 million and are part of the Stanley Foundation's $20 million grant program, which supports researchers at all levels. Sixteen of the 1999 awards support projects in countries other than the U.S., including Israel, Canada, the Netherlands, Australia, England, Scotland, Ireland, Germany, Spain, and Italy. Researchers interested in applying for a research award should contact Kelly Wilson, Research Awards Administrator, Stanley Foundation Research Programs, 5430 Grosvenor Lane, Suite 200, Bethesda, Maryland 20817; telephone, 301-571-0760, ext. 119; fax, 301-571-0769; e-mail, firstname.lastname@example.org. Applications must be received by March 1, 2000.
Grants for mental health services: The Center for Mental Health Services has awarded more than $43 million in mental health services grants to communities across the country. The grants will fund six new programs and provide continuation and supplemental awards to seven others. The biggest award, $18 million, funds an ongoing child mental health initiative at 20 sites. The money will be used to further implement a range of community-based and family-focused services for children with serious emotional disturbances and their families. Other programs supported by the grants include a national resource and training center to promote the planning and development of culturally competent systems of care for children and their families, a program to move homeless families out of homelessness, a farm resource center to support rural outreach activities, and a minority fellowship program designed to increase the number of mental health professionals qualified to serve members of ethnic minority groups.
Violence Prevention Coordinating Center: The National Mental Health Association (NMHA), in partnership with the National Association of School Psychologists, has announced plans to establish a Violence Prevention Coordinating Center to help communities across the country reduce school violence and promote healthy child and family development. The center is funded through the Department of Health and Human Services, the Department of Education, and the Department of Justice. It will provide information to the general public and intensive technical assistance to two groups of federal grantees: 54 communities in the Safe Schools-Healthy Students program and 40 agencies in the School Action program. Both programs focus on implementing prevention and early intervention programs to help build resiliency in students, promote healthy choices, and decrease the risks associated with violence and substance abuse.