Electronic Tablets Revolutionize HIV Research in Rwanda
In October 2014, data gathering and analysis became faster and more efficient in Rwanda when research nurses studying mother-to-child transmission of HIV for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) began collecting real-time data on Android tablets.
Previously, nurses working on the Kabeho Study (Kigali Antiretroviral and Breastfeeding Assessment for the Elimination of HIV) had been using paper forms to track a cohort of participants in Rwanda’s national prevention of mother-to-child transmission of HIV (PMTCT) program. The Kabeho Study, which is funded by U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through United States Agency for International Development (USAID), is significant because it is analyzing universal, lifelong antiretroviral treatment (ART) for pregnant and breastfeeding women living with HIV — the approach recommended by the World Health Organization (WHO).
Nurses and Study Participants Prefer Data Collection on the Tablets
Research nurses estimate that the use of tablets has reduced interview time by 20 percent. This time is precious not only for the nurses, but for the 608 HIV-positive women who are enrolled in the study.
“The tablet does not decrease my engagement with the participant or make the woman feel less important,” says Petronille Musengente, one of the research nurses. “It is very easy to use, and it makes our work very quick and precise.”
However, nurses emphasized the importance of explaining why the tablets are being used to the study participants.
“If you don’t explain why you are using the tablet, the participant may think that you are recording or photographing their interview,” remarked study nurse Rosine Malayika. “I always explain to them that the tablet allows me to store the sensitive information in a safe way.”
“I have been a data collector, and I know how tedious it can be to go through 20-page forms,” says Dieudonne Ndatimana, senior data manager for the Kabeho Study. “If, instead, you have the ability to swipe through, screen by screen, it’s much more engaging and the data are easier to digest.”
Once the nurses complete their interviews, the data are automatically uploaded to a secure server and within minutes, the data are often available to download, review, and analyze.
“We are able to run analyses and write manuscripts shortly after data collection,” says Emily Bobrow, PhD. a senior research officer at EGPAF. “This is such a change from the huge delays we have experienced in the past when collecting data on paper forms.”
New Software Saves Time, Money, and Space
For this game-changing transition, EGPAF turned to an interview product called SurveyCTO, which is based on an open-source software platform called OpenDataKit (ODK). SurveyCTO captures, transports, and processes data collected by the research nurses.
“Compared to paper-based collection of data, the use of tablets is so much more efficient on many levels,” says Ndatimana. “There [used to be] a lot of time, effort, and paper.”
In a study with more than 5,000 quantitative forms — many of which are 10-20 pages long — massive efficiencies are gained when data collection, updating, and distribution occurs with the click of a button. Ndatimana predicts a substantial reduction in paperwork, filing, and printing. He recalls a day early in the study when 10 toner cartridges were used in a single day, costing $1,000.
Fuel is another area in which savings are realized. A driver now doesn’t have to spend most of his time going back and forth between sites collecting and distributing reams of printed forms.
Costs are further reduced by minimizing the need for data entry. In a paper-based system, the data needs be transferred to an electronic form and saved to a database. This requires several data entry clerks and a database developer. The set-up and design of a database alone would cost nearly $25,000. Instead, EGPAF pays $99 per month to keep data on a secure server.
Better Data Yield Better Results
In addition to significant savings in money and time for printing, electronic data collection also leads to significant gains in data quality. Under a paper-based system, data entry can contain many errors, and the data review process is painstaking and tedious. In an electronic system, error checks and skipping patterns (questions tailored to distinct responses) are built into the questionnaires, so interviewers are far less likely to make errors during data collection.
Using an open-source electronic system also means having access to a virtual community to help troubleshoot.
“Whenever I have a problem with anything in the system, I can access the online forum, and explain my problem, and I will get answers very quickly and for free,” Ndatimana explains. “If we had our own database in-house, whenever we had any problems, we would have to solve them in-house, which is more challenging.”
Other key organizations conducting research in the health sector are catching on. Ndatimana and the rest of the Kabeho team have been asked to present and lead training sessions for the Rwanda Ministry of Health, Project San Francisco, and the U.S. Centers for Disease Control and Prevention (CDC).
Now EGPAF-Lesotho has taken on the SurveyCTO software for its own prospective cohort study evaluating the implementation of their PMTCT program with universal, lifelong ART for pregnant and breastfeeding women living with HIV. EGPAF-Swaziland will also start using it soon.
This article is made possible by the generous support of the American people through the United States Agency for International Development (USAID) and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). The contents are the responsibility of the Elizabeth Glaser Pediatric AIDS Foundation and do not necessarily reflect the views of USAID or the United States government.