Recommendation 4-2. The Department of Health and Human Services should issue guidance to the HIV care community to clarify what is permissible patient information to share given federal and state privacy laws.
The Role of Health Information Technology and Data
System Integration in the Collection of HIV Care Data
Increased exchange of health-related information across providers of HIV care and supportive services has the potential to improve care coordination and longitudinal tracking of care. Some integrated health care systems, such as the VHA and Kaiser Permanente, effectively manage information across providers within their networks, but most PLWHA receive care and supportive services outside of these networks, and many receive care across multiple organizations. The committee identified local efforts in health information exchange that have resulted in improved monitoring of patient care and outcomes. However, these efforts have not been scaled broadly among entities serving PLWHA.
Recommendation 5-1. The Department of Health and Human Services should review existing mechanisms for the confidential and secure exchange of health information to provide a platform to increase the exchange of such information among entities serving individuals with HIV. These entities may include, but are not limited to, state and local health departments, government agencies, and community-based organizations funded to provide medical care, substance use and mental health services, and housing and other supportive services.
Interoperability—the ability of different IT systems and software applications to communicate, exchange, and use information—is not fully possible in the United States at this time due to a lack of infrastructure to support it. For the most part, the various sources of care and care coverage for PLWHA have their own health IT systems with disparate architectures and vocabularies, posing a challenge to the exchange of data across systems.
Recommendation 5-2. The Department of Health and Human Services and the Office of the National Coordinator for Health Information Technology should provide technical assistance and policy guidance to state and local health departments, clinical providers, and other agencies serving individuals with HIV to improve the interoperability of data systems relevant to monitoring HIV care and supportive services.