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Risk of confidentiality breach can make HIV patients shy from
treatment
http://www.eurekalert.org/pub_releases/2001-08/du-roc081501.php
DURHAM,
N.C. – HIV-positive patients from rural areas may shun
life-extending treatment rather than risk breaches of
confidentiality, according to a Duke University study.
In a series of focus group discussions with HIV-positive patients
from rural areas of North Carolina, researchers sought the patients'
perspectives on issues of confidentiality, including the extent of
health care provider access to their records, how records are
maintained and the level of control patients think they should have
in permitting access to their records.
The results of the qualitative analysis of the discussions are
reported in the latest issue of AIDS Care (Vol. 13, No. 4),
published this month.
"A breach of confidentiality carries the potential for a greater
consequence on the lives of these patients than it may in many other
diagnoses, and so confidentiality has a deeper meaning for them,"
said Kathryn Whetten-Goldstein, assistant professor in the Terry
Sanford Institute of Public Policy's Center for Health Policy, Law
and Management and primary investigator for the study, which was
funded by the Department of Health and Human Services. "A perceived
risk of a breach of confidentiality can prompt an HIV patient to
choose a clinic several hours away rather than one closer to home,
to withhold information from providers or even to reject treatment
altogether."
For patients with HIV, researchers have said, breaches in
confidentiality may result in discrimination, lesser quality health
care or the loss of their home, job, health insurance and family. To
add to the gravity of the situation, HIV patients have little
recourse if their confidentiality is breached, since court action is
most often prohibitively expensive and also leads to broader
exposure of their medical condition.
Fifteen HIV patients who take part in established support programs
participated in the three focus groups; nine were African American
and seven were women. Normally the three support programs attract a
combined total of 16 participants, so the turnout for the study was
considered high.
The patients defined confidentiality more strictly than health care
providers often do, saying it meant limiting the transfer of medical
information to others as determined by the patient. The patients
thought they should have ultimate rights in deciding who --
including doctors, nurses, social service providers, family and
friends -- can access their medical information. While the patients
placed great importance on confidentiality, they said they did not
think it really existed in the medical setting. All but two had
experienced confidentiality breaches in health care settings when
someone knew of their HIV-positive status without having been told
directly by the patient.
Many of the participants raised concerns about computer
record-keeping and its potential for a breach of confidentiality.
They thought that computerization allowed doctors and others not
directly involved in their care to access information not pertinent
to non-HIV care, and also expressed a distrust of computer system
security. One participant summed up the situation: "Anybody can hack
into anything they want to."
Two-thirds of the focus group participants said they chose their
health care site based on factors that included the professionalism
of the medical staff, clinic size or use of a computer network that
expanded possible access to their files. Trust in the health care
providers mitigated concern for confidentiality breaches via
computer systems, the researchers said, but a breach in
confidentiality stemming from computer records triggered a distrust
of the medical care.
Besides discussing their concern for the risk of breaches, the focus
group participants said that health care providers should put more
teeth in policies regarding patient confidentiality. Those with
access to records or information should be told that a breach in
confidentiality carries severe consequences for the offender,
including immediate dismissal from the job. Overall, the
participants thought policies should require providers to explain
how they share medical information, request patient consent for
access to records and punish those who breach confidentiality.
"This study showed us that HIV patients want a high level of control
over who sees their medical records and how their privacy is
protected," Whetten-Goldstein said. "It shows a need for providers
to be trained to talk with patients about record-keeping and
sharing. Since patients may make decisions about their treatment
based on confidentiality issues, it is important for providers to
understand the HIV patient's perspective."
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In addition to Goldstein, Dr. Jeremy Sugarman, director of Duke's
Center for the Study of Medical Ethics and Humanities, and Trang
Quyen Nguyen, now a graduate student at the University of North
Carolina, also participated on the study team.
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