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.