Although Russia has started to build a normative base for PMTCT programs by establishing mechanisms of collaboration across maternal and child healthcare and AIDS care systems and increasing access to PMTCT interventions over the past few years, no effective system for tracking PMTCT outcomes regionally and nationally currently exists. In most of Russia, PMTCT monitoring at healthcare institutions is based on paper records and is fragmented and inefficient. Standardization at both regional and national levels is needed so data across multiple institutions can be uniformly registered and analyzed, as well as reported in a timely manner to regional authorities and federal institutions.
Working with the Samara Information and Analytical Center and federal institutions responsible for PMTCT monitoring, AIHA developed an electronic PMTCT monitoring database in keeping with WHO/UNICEF/UNAIDS standards, yet adapted to Russia’s unique conditions and resources. To protect patient confidentiality, the database automatically assigns a unique identification code to each entry thereby allowing deletion of personal information (names, addresses) when data is shared with other institutions.
The database contains standardized prenatal, delivery, and postpartum records; newborn data; and detailed information about follow-up care for mother and child. Tracking is done for registered cases of HIV-positive pregnancies then, after delivery, for mother-infant pairs until the baby reaches the age of 18 months and HIV diagnosis is confirmed or dismissed. In addition to tracking vertical transmission rates, specific indicators monitor prenatal care coverage by stage, ARV prophylaxis, HIV counseling and testing, adherence counseling, breastfeeding counseling, delivery type, social status, risk factors, and level of assistance from social support organizations.
Available on CD-ROM, the program is supported by a manual on installation, data entry, and analysis, as well as technical guidance on establishing information exchange protocols. Further analysis can be performed using case management data.
Multi-institutional data exchange protocols resulted in regional regulatory orders supporting the project. This helps ensure consistent data collection and timely feedback to provider organizations, as well as proper analysis and generation of reports to regional and federal authorities. Current levels of info-tech capacity in Russia allow data entry and exchange to be done electronically through computers at AIDS centers and maternity departments, which may be linked through secured modem connections. Data from these sites are entered by assigned staff separately, while data from women’s consultations is captured through paper-based forms used at these centers and entered by AIDS center staff. In regions with insufficient info-tech capacity, data may be entered into the database at AIDS centers, while women’s consultations and maternity houses can provide data on paper-based forms.
The database is physically located at territorial AIDS centers where a staff member is assigned to the project to assure consistency in data entry and analysis. In an effort to make the database more user-friendly, AIHA built in additional features to assist healthcare professionals providing care to women and their children. For example, they can fill out required reporting forms on screen, consult useful references and cue cards, or print educational materials to share with patients.