Data Sources for a Data to Care Program
To implement a linkage and re-engagement in care program based on HIV surveillance data, health departments also should consider using a number of data sources in addition to HIV surveillance data. As implied in the name—Data to Care: Using HIV Surveillance Data to Support the HIV Continuum of Care—the HIV surveillance database maintained by a jurisdiction’s health department is a necessary data source for conducting this type of program because it contains information on all HIV-diagnosed persons reported to the health department. Laboratory data are necessary for program operation because they contain information about HIV-related laboratory tests conducted on HIV-diagnosed persons in the jurisdiction, which are used as a marker for receipt of care.
Health departments can run a CDC-developed SAS program
against the HIV surveillance database, or use a locally developed SAS program, to generate a line list of individuals who appear to be “not in care” (NIC) based upon available HIV surveillance and laboratory data. Once health departments create a line list of HIV-diagnosed NIC persons, they should turn to other sources of information and data that might provide evidence that a person actually is receiving care even if surveillance data suggest otherwise.
Information sources might be a healthcare provider or case manager, and data sources could be one of a number of public health and non-public health databases. For example, a person might appear on a line list extracted from the HIV surveillance database without any evidence of laboratory tests in the past 2 years. However, when a health department matches this list to the ADAP database
, they might find that the person is currently in care and receiving medication assistance through the ADAP system and can be removed from the NIC list. This information is not only important for Data to Care
programs; it also is important information for the HIV surveillance program so that it can investigate why there are missing laboratory tests and can follow up.
Health departments also should turn to other data sources that might complete missing information for persons identified as NIC. For example, if someone is on the NIC line listing and does not have a telephone number in the HIV surveillance database, health departments potentially could use other databases to find a valid telephone number.
The next page describes common data sources that could inform a Data to Care program. Health departments routinely use many of these data sources, but perhaps do not typically share them across their program areas. They might need to develop data sharing agreements as Data to Care programs look to access multiple data sources. These data sources provide information that could assist in the identification, investigation, and location of NIC clients. The list we provide on this site is not exhaustive and we encourage health departments to explore other internal or external software systems that might have data that could support these activities. Areas considering using external systems should ensure their use complies with state and local laws and regulations. CDC’s Technical Guidance for HIV Surveillance Programs also provides guidance about conducting electronic database matching.