What was the problem?
Data management systems that support individual-level patient tracking are often neither affordable nor easy to implement. However, being able to track patients at the individual level can facilitate timely and accurate HIV service delivery to those in need. For example, real-time follow of antiretroviral treatment (ART) patients who have not picked up their medications reduces the amount of time an ART patient is without medication.
Researchers in a large-scale, PEPFAR-funded project in Botswana (known as the Botswana Combination Prevention Project, or BCPP), needed to follow project participants over time, using an electronic platform, in order to measure the impact of offered HIV services. That is, researchers needed data demonstrating that persons diagnosed with HIV were linked to treatment, initiated and retained on ART, and are virally suppressed in a timely and efficient manner. As such, the requirements of the electronic tracking system included:
Trace persons who tested positive for HIV, but did not initiate ART (i.e., persons who were lost to follow up)
Monitor individuals through the clinical cascade, from HIV testing through viral suppression
Uniquely identify persons (either through unique identifiers (UIDs) or another approach)
Monitor movement of persons across communities and geographic spaces
Record age and sex at the individual level
The investigators undertook an extensive search to identify and purchase an affordable data management system that supported individual patient tracking over time. However, they were not successful in finding a system that met their needs. As a result, the Botswana Harvard AIDS Institute Partnership developed a system rather than purchasing one.
What is the tool?
The flexible, affordable open-source data management system supported the longitudinal tracking of patients on an individual basis for the duration of the project.
Key steps in building the data linkage system included:
Key elements to ensure data security include a firewall, hash keys to ensure encrypted data cannot be unencrypted, user logins, physical security and access, and routine data back-up measures.
Tablets have built-in validation tools to limit errors (e.g., invalid, implausible numbers). Staff are also trained to review data for completeness and errors.
Confidentiality of Data
Data were ‘hashed’ or encrypted to protect the privacy of patients in this project. As a result, data became “unusable, unreadable, or indecipherable” when unauthorized persons attempted to view the data. An Omang, the Botswana national identification card for citizenship, UID was encrypted with a one-way hash prior to being transferred to the project server. When there was consent, or a waiver of consent, from the client to extract identifiable data from the clinic medical record systems (electronic and web-based), clinic data were linked with HIV testing data using the ‘hashed’ Omang.
The average costs for establishing the project’s infrastructure for the 30 communities was $14,394 per community (total = $431,815). The annual bandwidth and maintenance cost for each of the three communities where this was implemented was $4,974 (total = $14,922). The project bought 18 laptops in 2016 to replace agency laptops at the project sites. The cost was $20,625, or $1,146 per laptop for the 18 Dell Latitude 3470 laptops purchased. Estimates for the total cost of the equipment used for the database hardware were as follows: $5,500 for Ubuntu server, $1,200 for tape backup and $3,500 for UPS for a total of $10,200. Please note, with typical information technology systems, the standard replacement cycle for hardware is approximately every 3 years. The annual cost to maintain the hardware and network is $28,000/year.
How to Use the System:
After BCPP research assistants completed their daily data entry of patient level data collected at the community level, they reported to BCPP ‘base operation village’ trailers (i.e., their main community-based headquarters). The research assistants’ laptops automatically connected to the secure Wi-Fi when in 15 meters range. Data were synchronized, uploaded, and transmitted to the server at the Botswana Harvard AIDS Institute Partnership offices.
Complete details on this data linkage approach can be found at: https://aids.harvard.edu/after-the-capture/#more-6903. Countries can access the BCPP data management system (Python modules) at GitHub (https://github.com/botswana-harvard).
This BCPP data linkage management system facilitated the rapid examination of the effects of HIV clinical interventions on timely patient-level linkage to treatment, retention, and viral suppression rates; and follow-up of patients within 24 hours as opposed to months later.