So much for keeping secrets: The importance of considering patients' perspectives on maintaining confidentiality

Abstract

Little data are available from patients' perspectives regarding the maintenance of confidentiality by care providers. Such data may be useful in determining the importance of confidentiality to patients and in developing appropriate policies and procedures regarding confidentiality. Three focus groups were conducted with support groups of rural HIV-positive patients. Text was coded inductively and analyzed with software designed for qualitative analysis. Participants perceived breaches of confidentiality in hospitals, clinics and health departments that occurred by word of mouth, computers, facsimile and written materials. Patients included sharing stigmatizing medical information among medical providers without prior consent as a breach. They made decisions about where to seek care based on the degree of professionalism of medical staff (which included respecting confidentiality), clinic location or the level of security of the organization's computer network since they believed that computers increase information access. Finally, participants believed that medical personnel should be taught the importance of maintaining confidentiality and that those who violated confidentiality should be punished. Patients would like confidentiality policies that require providers to: (1) explain procedures for sharing information, (2) request patients' specific consent for access to their medical records, even among other providers, and (3) punish those who breach confidentiality.

The experience of “medicine companions” to support adherence to antiretroviral therapy: quantitative and qualitative data from a trial population in Uganda

“…They stress that “witnessed dosing of HIV antiretroviral therapy is complicated by the need for lifelong treatment, daily medication dosing, and the consequent impact on individual rights in the setting of a highly stigmatizing disease.” Finally, they note that “we still must face the question of why calls for directly observed HIV therapy are limited to sub-Saharan Africa, and not North America or Western Europe” (Liechty & Bangsberg, 2003). A study involving focus groups with rural American HIV patients noted that “Some participants … appeared to be more willing to risk their health than risk people learning of their medical condition” (Whetten-Goldstein, Nguyen, & Sugarman, 2001). Could this be the case with certain categories of HIV-positive African patients as well?…”

Variations in Rural AIDS Epidemiology and Service Delivery Models in the United States

“…Although HIVpositive urban dwellers also encounter prejudice and discrimination, research suggests that rural residents experience greater social isolation and problems maintaining anonymity (Heckman & Miller, 2000;Heckman, Somlai, Kalichman, Franzoi, & Kelly, 1998a). Concerns about breaches in confidentiality often cause HIV-positive rural residents to delay treatment or to travel to distant medical centers for care (Castaneda, 2000;Whetten-Goldstein, Nguyen, & Sugarman, 2001b). Community prejudices also make it difficult for HIV care providers to publicize their services and to find locations that clients can visit without fear of having their HIV serostatus exposed (McKinney, 1998a).…”

Examining the Perceptions of Service Providers for Persons Living with HIV/AIDS in Rural Localities

“…This in turn could generate greater community acceptance, which could in turn reduce feelings of isolation for the person living with HIV/AIDS. Issues related to confidentiality represent a primary concern for persons living with HIV/AIDS in the literature (Stephenson, 2000;Whetten-Goldstein, Nguyen, & Sugarman, 2001) and were observed in this study as well. Patient education about confidentiality should include a dialogue with the patient in order to better understand their interpretation of confidentiality as well as the explanation of procedures for sharing medical information.…”