Adapted from: Wireless Technology for Social Change: Trends in Mobile Use by NGOs. Sheila Kinkade and Katrin Verclas. Washington, DC and Berkshire, UK: UN Foundation–Vodafone Group Foundation Partnership, 2008.
Issue: Monitoring Disease in Developing Countries
"It was the late 1990s and I was amazed by the lack of adoption of modern IT [information technology] in collecting health data, whether you were in Haiti or parts of the U.S.,” recalls Joel Selanikio, a pediatrician, technologist, epidemiologist, and co-founder of the non-profit DataDyne.org.
“Government agencies tend to lag far behind the private sector in pursuing new technologies.”
Dr. Selanikio began his public health career working at the Centers for Disease Control and Prevention (CDC), a U.S. government agency. He traveled the globe investigating disease outbreaks. Searching for clues, he collected and analyzed health data, evaluated programs, interviewed patients, and was sometimes able to discern patterns others had overlooked. Yet, as is often the case in addressing public health concerns, his efforts were hindered by a lack of reliable, systematically recorded data. In a number of countries, critical health data was being collected through agonizingly slow paper-based systems—if it was collected at all. These gaps in access to up-to-date public health data made informed public health decision-making extremely difficult. Having worked earlier in his career as an IT consultant on Wall Street, Selanikio began exploring the use of handheld computers to record field data. He discovered that while the hardware needed to collect data was readily available, the software required was often too complex and costly for use by those in developing countries.
Collecting Health Data through an Open-Source Mobile Software Tool
In 2002, Selanikio teamed up with computer scientist Rose Donna to form the DataDyne Group, a non-profit organization dedicated to increasing access to public health data through mobile software solutions. Inspired by an earlier CDC product called Epi Info, Selanikio created EpiSurveyor, a free, open-source, mobile data collection software tool. EpiSurveyor offers health data collection forms that can be downloaded at no cost and modified by anyone with basic computer skills.
Selanikio and Donna believed that this technological innovation could empower developing country health
officials with the tools needed to gather time-sensitive health data quickly, and without outside assistance. In many cases when developing countries track public health data, they do so by hiring programming consultants to customize the required IT solutions. This arrangement can strain limited resources, and in some cases, raise questions about health data ownership.
Selanikio designed EpiSurveyor to lower the barriers of access to public health data through a user-friendly and easily adaptable health data collection tool. “We wanted to create a tool that the average person who knows how to word process could handle,” Selanikio says.
Piloting the Approach
Shortly after developing EpiSurveyor, and working with Dr. Mark Grabowsky, then of the American Red Cross, Selanikio entered and won a grant from the World Bank’s Development Marketplace Competition. They used the award to develop and test a beta version of the software in Kenya. At the same time, Selanikio and Donna were launching DataDyne, with the goal of creating mobile data products to address public health needs in developing countries.
In 2006, DataDyne entered into a partnership with the United Nations Foundation, The Vodafone Group Foundation, the World Health Organization (WHO), and the Ministries of Health of Kenya and Zambia to launch a pilot program that scaled the beta-tested software at the provincial level. Through the pilot, public health officials in Kenya and Zambia received training and mobile computing devices to support the fight against measles.
The pilot sought to contribute to the goals of the Measles Initiative, a partnership aimed at reducing measles deaths worldwide. Monitoring measles vaccination rates and disease outbreaks in hard-to-reach areas was a complex and time-consuming task. While the Measles Initiative had worked with DataDyne in using PDAs for this purpose in the past, Selanikio realized that switching from a consultant-based solution to a country- owned process using EpiSurveyor would provide a more sustainable solution.
“The long-term goal [of the pilot] was to strengthen systems—to make clinics more responsive and train health surveillance officers to be able to report more accurately and on a more timely basis about measles and other priority diseases,” says Andrea Gay, executive director of Children’s Health for the United Nations Foundation and senior advisor to the Measles Initiative.
Outcome: Improved Public Health Response to Disease Outbreaks
Through the pilot, thirty provincial health supervisors in each country were trained in how to use EpiSurveyor on Palm Zire™ handheld computers. The health officers then used EpiSurveyor to collect management data about public health clinics—such as medical supply quantities and levels of staff training.
In both countries, officers went beyond the purpose of the pilot to gather additional health data as new needs arose. In Zambia, for example, the supplied PDAs and EpiSurveyor software were used by health officers to conduct a post-measles vaccination campaign coverage survey—the very first time that such a survey had been independently conducted by in-country staff using PDAs.
Another instance in which local health officials modified the open source software to meet new health needs as they arose occurred in Kenya, when political unrest and fighting in neighboring Somalia brought in waves of unvaccinated refugees—some of whom carried the polio virus. Despite the fact that the last native case of polio in Kenya had been seen more than two decades ago, the human migration introduced a new threat of disease outbreak.
Titus Kolongie, who works with the Kenya Expanded Programme on Immunizations (KEPI), was part of a cadre of health workers trained on EpiSurveyor who responded to the crisis. Using a PDA loaded with EpiSurveyor, he evaluated an emergency polio vaccination campaign that targeted individuals who may have come into contact with the virus as it entered Kenya. In total, KEPI was targeting almost two million
children for vaccination, giving the polio virus fewer places to hide, and preventing life-long infections from a debilitating disease.
The pilot officers in Zambia learned of the outbreak investigation form created by the Kenyan team, downloaded it from the project website, and put it into use in Zambia with minor modifications. This adaptation of the software and forms came as great news to Selanikio. “First, you had health professionals using the software—on their own initiative—to meet a pressing need,” he explains. “Next, you had health professionals in a different country sharing forms leading to the standardization of data. This is a potentially revolutionary change in the way we collect data.” If comparable health data were available across countries, it would be easier to share best practices and implement more widespread interventions, he adds. Tools like EpiSurveyor offer great potential for helping to monitor these needs.”
Challenges: Overcoming In-Country Logistical Constraints
Selanikio points out the challenge of measuring the effectiveness of a tool like EpiSurveyor in the face of independent variables that users have no control over. In some communities in Kenya, for example, lack of fuel and bad weather made it difficult for those trained to use EpiSurveyor to travel to clinics.
An abundance of new data is also generating a demand in government ministries of health for back-end data aggregation and analysis tools. This means that in some cases, until aggregation and analysis are embedded in the system, this new data may not be acted upon as quickly as one might hope. Still, this offers a real opportunity for further research and development to bring to fruition complete front- and back-end solutions.
For more, see Wireless Technology for Social Change: Trends in Mobile Use by NGOs (PDF)
Datadyne: Collecting Health Data through Open Source Tools Locations
Adapted from: Wireless Technology for Social Change: Trends in Mobile Use by NGOs. Sheila Kinkade and Katrin Verclas. Washington, DC and Berkshire, UK: UN Foundation–Vodafone Group Foundation Partnership, 2008.
Issue: Monitoring Disease in Developing Countries
"It was the late 1990s and I was amazed by the lack of adoption of modern IT [information technology] in collecting health data, whether you were in Haiti or parts of the U.S.,” recalls Joel Selanikio, a pediatrician, technologist, epidemiologist, and co-founder of the non-profit DataDyne.org.
“Government agencies tend to lag far behind the private sector in pursuing new technologies.”
Dr. Selanikio began his public health career working at the Centers for Disease Control and Prevention (CDC), a U.S. government agency. He traveled the globe investigating disease outbreaks. Searching for clues, he collected and analyzed health data, evaluated programs, interviewed patients, and was sometimes able to discern patterns others had overlooked. Yet, as is often the case in addressing public health concerns, his efforts were hindered by a lack of reliable, systematically recorded data. In a number of countries, critical health data was being collected through agonizingly slow paper-based systems—if it was collected at all. These gaps in access to up-to-date public health data made informed public health decision-making extremely difficult. Having worked earlier in his career as an IT consultant on Wall Street, Selanikio began exploring the use of handheld computers to record field data. He discovered that while the hardware needed to collect data was readily available, the software required was often too complex and costly for use by those in developing countries.
Collecting Health Data through an Open-Source Mobile Software Tool
In 2002, Selanikio teamed up with computer scientist Rose Donna to form the DataDyne Group, a non-profit organization dedicated to increasing access to public health data through mobile software solutions. Inspired by an earlier CDC product called Epi Info, Selanikio created EpiSurveyor, a free, open-source, mobile data collection software tool. EpiSurveyor offers health data collection forms that can be downloaded at no cost and modified by anyone with basic computer skills.
Selanikio and Donna believed that this technological innovation could empower developing country health
officials with the tools needed to gather time-sensitive health data quickly, and without outside assistance. In many cases when developing countries track public health data, they do so by hiring programming consultants to customize the required IT solutions. This arrangement can strain limited resources, and in some cases, raise questions about health data ownership.
Selanikio designed EpiSurveyor to lower the barriers of access to public health data through a user-friendly and easily adaptable health data collection tool. “We wanted to create a tool that the average person who knows how to word process could handle,” Selanikio says.
Piloting the Approach
Shortly after developing EpiSurveyor, and working with Dr. Mark Grabowsky, then of the American Red Cross, Selanikio entered and won a grant from the World Bank’s Development Marketplace Competition. They used the award to develop and test a beta version of the software in Kenya. At the same time, Selanikio and Donna were launching DataDyne, with the goal of creating mobile data products to address public health needs in developing countries.
In 2006, DataDyne entered into a partnership with the United Nations Foundation, The Vodafone Group Foundation, the World Health Organization (WHO), and the Ministries of Health of Kenya and Zambia to launch a pilot program that scaled the beta-tested software at the provincial level. Through the pilot, public health officials in Kenya and Zambia received training and mobile computing devices to support the fight against measles.
The pilot sought to contribute to the goals of the Measles Initiative, a partnership aimed at reducing measles deaths worldwide. Monitoring measles vaccination rates and disease outbreaks in hard-to-reach areas was a complex and time-consuming task. While the Measles Initiative had worked with DataDyne in using PDAs for this purpose in the past, Selanikio realized that switching from a consultant-based solution to a country- owned process using EpiSurveyor would provide a more sustainable solution.
“The long-term goal [of the pilot] was to strengthen systems—to make clinics more responsive and train health surveillance officers to be able to report more accurately and on a more timely basis about measles and other priority diseases,” says Andrea Gay, executive director of Children’s Health for the United Nations Foundation and senior advisor to the Measles Initiative.
Outcome: Improved Public Health Response to Disease Outbreaks
Through the pilot, thirty provincial health supervisors in each country were trained in how to use EpiSurveyor on Palm Zire™ handheld computers. The health officers then used EpiSurveyor to collect management data about public health clinics—such as medical supply quantities and levels of staff training.
In both countries, officers went beyond the purpose of the pilot to gather additional health data as new needs arose. In Zambia, for example, the supplied PDAs and EpiSurveyor software were used by health officers to conduct a post-measles vaccination campaign coverage survey—the very first time that such a survey had been independently conducted by in-country staff using PDAs.
Another instance in which local health officials modified the open source software to meet new health needs as they arose occurred in Kenya, when political unrest and fighting in neighboring Somalia brought in waves of unvaccinated refugees—some of whom carried the polio virus. Despite the fact that the last native case of polio in Kenya had been seen more than two decades ago, the human migration introduced a new threat of disease outbreak.
Titus Kolongie, who works with the Kenya Expanded Programme on Immunizations (KEPI), was part of a cadre of health workers trained on EpiSurveyor who responded to the crisis. Using a PDA loaded with EpiSurveyor, he evaluated an emergency polio vaccination campaign that targeted individuals who may have come into contact with the virus as it entered Kenya. In total, KEPI was targeting almost two million
children for vaccination, giving the polio virus fewer places to hide, and preventing life-long infections from a debilitating disease.
The pilot officers in Zambia learned of the outbreak investigation form created by the Kenyan team, downloaded it from the project website, and put it into use in Zambia with minor modifications. This adaptation of the software and forms came as great news to Selanikio. “First, you had health professionals using the software—on their own initiative—to meet a pressing need,” he explains. “Next, you had health professionals in a different country sharing forms leading to the standardization of data. This is a potentially revolutionary change in the way we collect data.” If comparable health data were available across countries, it would be easier to share best practices and implement more widespread interventions, he adds. Tools like EpiSurveyor offer great potential for helping to monitor these needs.”
Challenges: Overcoming In-Country Logistical Constraints
Selanikio points out the challenge of measuring the effectiveness of a tool like EpiSurveyor in the face of independent variables that users have no control over. In some communities in Kenya, for example, lack of fuel and bad weather made it difficult for those trained to use EpiSurveyor to travel to clinics.
An abundance of new data is also generating a demand in government ministries of health for back-end data aggregation and analysis tools. This means that in some cases, until aggregation and analysis are embedded in the system, this new data may not be acted upon as quickly as one might hope. Still, this offers a real opportunity for further research and development to bring to fruition complete front- and back-end solutions.
For more, see Wireless Technology for Social Change: Trends in Mobile Use by NGOs (PDF)
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