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."
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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AIDS Care