09 – Strengthening Information Systems and Linkages to Care

Among the 4.1 million people missed each year by state notification systems, many are likely tested for TB, but not placed on treatment or recorded in national registers due to failures in communication between the entities responsible for implementing the various steps in the TB screening, testing and treatment cascade. WHO guidance states that people with TB should be notified at the point of diagnosis in order to track those who are diagnosed but not registered for treatment. However, the current practice of many national systems, particularly the manual ones, is to focus on notification at the point of treatment registration. (Even though facilities have “laboratory registers” as well as “treatment registers”, these are not routinely compared for consistency or for follow-up.) While it is worthwhile to monitor impact on notified diagnosis, it is fundamental to TB control that people confirmed with TB diagnosis but not initiated on approved treatment receive follow-up. Lack of communication and data management leads to a large portion of TB patients being missed.

A systematic literature review performed in 2018 looked at 48 studies to understand notification timeliness (4). The review found that only a minority of existing notification systems meet predefined, standardized or disease-specific timeframes. The review also found that while electronic systems reduce delays in reporting, the implementation of such systems requires considerable effort. Information and data management is of crucial importance in TB prevention and care in order to ensure that 4.1 million people are linked to services. However, even in settings where national TB programmes (NTPs) have introduced electronic systems, challenges persist. This field guide approaches TB data management from an implementation perspective, looking at how to build systems, roll them out, and utilize the data collected, and examining potential challenges at each step. This field guide also attempts to unpack the complex topic of data management in TB, describing some systems that have already been designed and implemented and making further suggestions as to how technology can be harnessed to serve the mission of finding the people with TB who are currently being missed.