ANNOUNCING: Town Hall Debate on Health Data
nnlm at u.washington.edu
Thu Apr 15 09:27:41 PDT 1999
--> Join a FREE Virtual Town Hall Debate on...
What is Health Data? When Should it be Protected?
Tuesday, April 13 through Monday, April 26, 1999.
For more information visit http://www.fnlm.org/conference
This wide-open and frank discussion will clarify when data is and is not
health information, and how different circumstances and contexts should
change the way we manage privacy and confidentiality.
The online debate will conclude with an onsite debate during the Health
Information Infrastructure Conference-- or HII99, as it is more commonly
Both the onsite and online Town Hall Debates will be moderated by Dennis
Melamed, editor of the Health Information Privacy Alert. The onsite
debate will include such experts as:
* Dean Rosen, Health Insurance Association of America
* Diedra Mulligan, Center for Democracy & Technology
* Kathleen Frawley, American Health Information Management Association
* John Lumpkin, Illinois Department of Health
In addition, Senator James Jeffords, Chairman of the key Committee which
will oversee health privacy legislation, will address the HII99 conference
on the afternoon of Tuesday, April 29.
PLUS, you can attend the first of nine regional workshops on Privacy,
Security & Confidentiality of Medical Records: Complying with Sweeping new
HIPAA Requirements on Thursday & Friday, April 29-30 following HII99!
Visit http://www.nonprofitmgt.com/privacy for more information on this
The Friends of the NLM gratefully acknowledge the support of 3Com in
making possible this virtual debate.
Read below for more background from the Moderator of the virtual debate.
Opening Statement by Dennis Melamed, editor of the Health Information
Technologies now allow personally identifiable health information to be
easily collected, correlated and widely transmitted, renewing concerns
over privacy and confidentiality. The use of this data for marketing,
employment and insurance purposes has generated an outcry from many who
contend that individuals do not have the rights or the tools to protect
themselves from the potential discrimination resulting from the disclosure
of this information. How has the technology deployed within the healthcare
community resulted in an erosion of privacy rights? The concern over
privacy has resulted in a broadened definition of health information. This
new definition includes administrative notifications about the use of
medical services, visits to health-related sites on the Internet, credit
card charges and a host of other transactions that have not been
traditionally viewed as part of a medical record.
The issue has gotten even murkier as basic concepts are being
re-evaluated. For example, the American Health Information Management
Association has created a task force to determine the need for a new
definition of a medical record, and the Food & Drug Administration is
reassessing the definition of "disease."
How should we define health information?
In one sense, the debate over health information privacy is premised on
two thoughts: fear of discrimination and a right to privacy. However,
these areas frequently come into direct conflict with other rights, such
as to access to government health and insurance services, and societal
obligations to protect human health and fight crime. What factors should
be considered in determining when the privacy of an individual supersedes
other rights or societal goals?
A major concern over medical privacy centers on the public's trust in
government. For example, the increased resource for prosecuting health
care fraud has increased government access to medical records. Mistakes in
handling or protecting health data have meant that the intimate details of
innocent people's lives can be and have been revealed in court documents.
Public uproar over the creation of a unique patient identifier to
facilitate electronic processing of administrative tasks also uncovered a
deep-seated distrust of the government and fears that the federal
government was creating a central medical database on its citizenry.
Recent attempts by the Department of Health & Human Services to collect
data for Medicare reimbursement for home health care have generated
tremendous opposition because of what were considered overly intrusive
When should the government have access to medical records and what
responsibilities and commitments should the government undertake in using
Another major concern is continued wariness of computer technology. The
Millennium Bug, computer viruses, such as Melissa, and revelations that
Microsoft had the ability to track files created by users of its popular
suite of business software suggest that the Internet and computer
technology are more vulnerable than portrayed. Not only is there a fear of
Big Brother: a mistake in sending information electronically can mean
intimate details are transmitted to millions of people over the Internet,
where a thriving business of information brokers operates. The healthcare
community has tried to address the issue internally and has found that the
public appears unwilling to accept the obvious benefits of computerized
records at face value.
The public appears suspicious of the healthcare community as well. Part of
the skepticism stems from the managed care paradigm that created an
infrastructure that has blurred the distinctions between healthcare
providers and payers.
Is the healthcare community the appropriate venue for resolving medical
privacy concerns? What must be done to convince the public that their
personal information will be protected in the evanescent world of
technological progress? In the alternative, are the public's concerns over
computer technologies and the Internet overblown?
National Network of Libraries of Medicine, Pacific Northwest Region
University of Washington nnlm at u.washington.edu
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