ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Monday, August 5, 1996 TAG: 9608050107
SECTION: NATIONAL/INTERNATIONAL PAGE: A-1 EDITION: METRO
DATELINE: WASHINGTON
SOURCE: The Washington Post
NOTE: Below
The Kennedy-Kassebaum health insurance reform bill, passed by Congress last week, is being hailed as a victory for consumers. But privacy advocates fear the bill includes provisions that will weaken patients' control over access to their medical information.
The section of the bill that has raised alarms concerns ``administrative simplification.'' The provisions require creation of a national computer network within 18 months that will allow companies in the health care industry to pass records freely among themselves, in much the way the Internet allows many different computers to exchange information.
Participation in the system will be mandatory for most health care providers; those who choose not to invest in the necessary computer equipment will work with data clearinghouses that will process the information for them.
On the surface, the provisions sound common-sensical: Such a database could help doctors take care of travelers who fall ill and would in theory save millions of dollars in health care costs annually.
But the downside of such efficiency is an inevitable loss of privacy for patients, consumer advocates say. Patients' consents are not required for their personal data to be used on the new network, and the bill does not set privacy guidelines for their use.
Worried that such ``cradle-to-grave records'' might end up hurting their job or insurance prospects, patients could lose confidence in the health care system, said Denise Nagel of the Lexington, Mass.-based National Coalition for Patient Rights. ``It will lead people to be more fearful to disclose information, less likely to access health care when they need it,'' she said.
``It is irresponsible for this law to pass without the privacy rules in place. It is very dangerous,'' said Janlori Goldman of the Washington-based Center for Democracy and Technology, a high-tech policy and advocacy group.
Goldman worked for passage of a medical privacy bill sponsored by Sens. Robert Bennett, R-Utah, and Patrick Leahy, D-Vt. That bill foundered under attack from the regulated industries on the one hand, which said it went too far, and privacy advocates on the other, who said it did not go far enough.
Rep. Jim McDermott, D-Wash., who has proposed a separate patient-privacy bill, spoke out against the Kennedy-Kassebaum bill on the House floor Thursday night. ``Why not hold off on this experiment with people's medical information until after privacy protections are in place?'' he asked. ``Once privacy is lost, it's lost forever.'' McDermott voted for the bill, however.
The administrative-simplification measures have been altered to address some concerns of privacy advocates. The bill calls for Congress to develop new laws ensuring privacy protections within two years. If Congress does not act, however, the Health and Human Services Department would have to write regulations to achieve the goal. But each deadline comes long after the health information network would have been put in place.
Goldman said that while she had grave concerns about the bill, she was heartened by its time limits for creating privacy protections, and by deletion of an earlier provision that would have pre-empted state privacy laws.
``It does put in motion a process for privacy rules to be written in the next couple of years,'' Goldman said. ``The industry is still going to be shackled by these conflicting state laws.''
Other aspects of the bill worry consumer advocates, however. The bill would require doctors to pass along to the databases ``encounter data,'' a vague term that might include detailed notes of visits and consultation. It also would require use of a ``unique identifier,'' such as a Social Security number, to link each patient's medical records.
McDermott said if the identifier were something as common as a Social Security number, ``Anyone who has access to your Social Security number, including the clerk at your local video store, could look up your medical records'' if he or she also had access to the medical-information network.
According to the report by the conference committee, the bill also allows medical researchers to use patient information gathered by health care companies in research without patients' consent.
Many privacy advocates support the research review of patient records, which could lead to new scientific discoveries about health care - but only so long as the patients cannot be identified. The conference committee report on the bill, however, says such data could be passed to researchers with the identifying information still attached.
LENGTH: Medium: 83 linesby CNB