Creating Bottom-Up Tech Tools to Fight Ebola
BY Rebecca Chao | Friday, November 21 2014
The fight against Ebola in West Africa is far from over even if media attention has waned. While the virus has slowed in Liberia, down from a reported 100 cases per day to around 20, Ebola is a disease that spreads exponentially and could still easily spin out of control. Nearby, Sierra Leone is seeing an uptick in infections, though Guinea, where the virus first appeared, is seeing a plateau. Overall, 14,000 have been infected and 500 have died.
Dr. Paul Farmer, an award-winning physician whose nonprofit Partners in Health is working in Liberia and Sierra Leone, recently spoke out about how to contain Ebola in West Africa. “There is no reason we can’t turn this around,” he said “You need the four S’s: staff, stuff, space, systems.”
While technology can help better coordinate volunteer recruitment and facilitate the donations of staff, stuff and space, what it does best is the fourth: systems. Systems for early detection, managing data and for amplifying and speeding up communications. Over the last few months, technologists and data enthusiasts from all over the world have gathered in panels and hackathons to express ideas and interest in aiding the fight against Ebola in West Africa. TechPresident recently covered New York Ebola Open Data Jam and wrote about what technology can and can’t do. But what emerged from these discussions is that technology needs to be more responsive -- designed after community input and not before. Here are a few systems that were built in just that manner.
Systems for Early Detection
One of the most crucial aspects of stemming Ebola is contact tracing. It is also one of the areas where technology can make a significant impact since computers can more easily track the exponential way in which tracing works: one infected person can come into contact with hundreds, each of whom, if infected, can also generated hundreds of potential of contacts.
Camilla Hermann is the founding director of Odisi Solutions, an emerging organization that is currently leading an effort to develop a computerized contact tracing system that they call Assisted Contact Tracing (ACT). To build the system, Odisi is working with a number of partners including tech and development startup InSTEDD, Medecins Sans Frontieres, Google Crisis Response, the Centers for Disease Control, Healthmap, and Cellcom.
ACT is a platform that digitizes the process of contact tracing through interactive voice response (IVR) to track outbreaks in real time and anticipate where the virus will appear next. The ACT system includes an automated system that follow-ups with contacts via SMS and builds location-based maps of where transmissions have occurred.
“What distinguishes ACT from a lot of other systems is that we grew from [bottom-up] knowledge rather than building a program first, then applying it to the scenario,” Hermann tells techPresident. She was working with the refugee community in Liberia just before the outbreak. “The landscape of emergency response is very chaotic. There are a lot of humanitarian groups doing what they do best but there is not a whole lot of coordination among them. A lot of our work is building right partnerships so we can scale and build quickly.” One of Odisi’s key partners, InSTEDD, grew out of Google.org, says Hermann, and is one of the only companies that has a deep grasp of using technology both in emergency environments and in the developing world, a terrain where even the smartest technology can fail because of the lack of infrastructure.
There are two components to ACT. The first is collecting and organizing data for use by organizations like the CDC as well as the general public. While there are currently a number of data collection tools out on the field, as Hermann stressed, there is no coordination among them. ACT, says Hermann sits on top of all these tools. “So when people take down initial information, be it on paper or through a mobile device, the ACT system then takes the data and logs the contacts,” she explains. To get the information into the system, Hermann explains that anything on paper is transferred into an excel sheet by a field supervisor or data manager. "The ACT desktop client is installed on that laptop through a GSM modem, which additionally allows the system to send and receive data from the central ACT server via USSD," explains Hermann.
The second component of ACT is wielding that data to do what its name implies: assist contact tracers. Rather than rifling through a gigantic list of contacts generated by an Ebola patient, “The ACT system allows [contact tracers] to prioritize who they see first. As a result of that, contact tracers know when they are going to see someone who has symptoms. It’s no longer going into the community and being unsure if they are interacting with a potential Ebola patient or one with malaria. ACT makes sure that knowledge is available.”
The ACT system will also enable automated medical follow-up through SMS. This tool, while it may seem impersonal at first, is crucial for two reasons. First, it would limit the level of exposure to Ebola for a healthcare worker. Using the contact data, through an automated process, “ACT will call each of those contacts for 21 days, talking to them in a specific dialect," says Hermann. Second, the automated check-ups allow a suspected patient to remain isolated at home, rather than having to stay in an isolation ward. “ACT is important for the system to allow people to pursue their own healthcare, so [potential patients] don’t have to go into isolation. It also provides information on how to care for a family member in their home with limited resources.” Hermann wants to be clear, however, that ACT does not make cold calls. These automated calls are first off, opt-in and they only follow after a doctor or contact tracer has first met and spoken with a potential Ebola patient.
One of the roadblocks to effect contact tracing is also the lack of trust between those trying to manage the disease (health workers, contact tracers, aid workers, and government officials) and the community at large. Many are afraid that workers will simply take their loved ones away to the hospital and they will never see them again. To rebuild trust, Hermann says that the community in West Africa needs to be connected with diaspora communities that can better communicate the realities of the disease.
“We can leverage the existing trust network in a diaspora community in Western countries to get information to those in West African countries,” says Hermann. “Having the people you trust who live in the US or UK provide valuable information will be a primary way of trust and adoption.”
This part of Odisi’s project has not yet been completed, however. “Right now we are developing a web platform to connect these two groups. A couple of groups set up websites that collect info on Ebola or offer more personal accounts of living through the outbreak. We would collect all these different pieces of information on the website and help better coordinate this diaspora mobilization effort.”
As with ACT, this project requires utilizing what already exists within the diaspora community by standardizing information, making it digestible and easily communicable to family and friends back in West Africa. “We want to make sure there is a central place for all groups already active to be able to pool resources and communicate with each other,” says Hermann.
Finally, Odisis is building these projects with longevity in mind. “ACT is something we are creating now but it is also really important in the recovering and reconstruction efforts when the outbreak is actually contained. It can serve as useful tool for mobilization beyond Ebola,” says Hermann.
Systems for Communication
One of the myths about Ebola that emerged during the height of the outbreak was that it could be contracted just by saying, “Ebola.” As the disease spiraled out of control, it became clear that misinformation and rumors, and a breakdown in communication between the government and its citizens, made the virus harder to contain.
IBM recently collaborated with Sierra Leone’s Open Government Initiative to create a platform for enabling citizens to communicate concerns and ask the government questions via SMS. This simple form of communication opens a window for the government to understand and respond to the needs of its citizens. The platform also generates “opinion-based heat-maps” that show where supplies may be required.
“Tapping supercomputing power and analytics capabilities via the cloud, the system is able to rapidly identify correlations and highlight emerging issues across the entire data set of messages,” IBM notes in a press release. “The system has also highlighted issues with the diagnosis of Ebola empowering the government to approach the international community to request more testing facilities and equipment.” It is currently being rolled out in Sierra Leone.
IBM also partnered with Cambridge University’s Africa's Voices to build a radio broadcast project to use the radio to engage citizens and solicit feedback. “Radio is a powerful medium in Africa but its potential to gather and analyse audience feedback has not been fully seized,” said Dr. Sharath Srinivasan, Director of Cambridge University’s Centre of Governance and Human Rights in the press release. “We are working with IBM to offer people across Sierra Leone a channel to voice their opinions and, crucially, to ensure that the data is rapidly analyzed and turned into valuable insight about the effectiveness of public service announcements and possible public misconceptions about Ebola.”
While the IBM initiative is more responsive to government needs, U-report, an initiative developed by UNICEF in Uganda, was built with the citizens’ needs in mind first. It was deployed two weeks ago in Liberia to help facilitate discussions about handling the Ebola crisis between citizens and government through SMS. It targets mainly youths, though the platform is also used by adults.
U-report currently has more than 270,000 users in Uganda, 70,000 in Nigeria and 50,000 in Zambia. It was launched in Liberia only two weeks ago to gauge how Ebola is affecting the lives of its young community, those roughly between the ages of 18 and 30, although a number of adults also use the system. The technology is also able to operate with very limited connectivity in remote regions of Africa.
To get plugged into the U-report community and become a U-reporter, anyone can text “join” to a toll-free number. They then are invited to submit a few personal details. Once a U-reporter, the individual receives questionnaires and surveys from UNICEF on a wide range of topics such as disease outbreaks, education, youth unemployment, social welfare, sanitation and hygiene. Users can respond to the polls by selecting an answer from a menu of choices or by submitting a written response. UNICEF then gathers the results and reports them back to the community through SMS, radio, as well as the Web. UNICEF also uses the information to ensure that its development programs are addressing the needs of the community.
In 2012, U-report was instrumental in helping contain an outbreak of an epilepsy-like illness known as nodding disease in Uganda. During a routine analysis of U-report messages, UNICEF discovered an uptick in reports from the northwestern part of the country of children between the ages of five and 15 experiencing symptoms peculiar to the disease: catatonic staring, refusal to feed or eat, and the telltale seizure that causes the head to nod.
UNICEF was able to swiftly work with Uganda’s Ministry of Health and the World Health Organization (WHO) to dispel fear and better inform the community about the disease, such as where to receive retreatment, the chances of recovery (nodding disease often permanently stunts growth and brain development), and how to treat the illness. U-report was even used to poll the community to determine whether adequate treatment was available at local health centers. The system also encouraged citizens to report cases and for health workers to quickly respond. Nearly 3,000 cases were reported. Soon after, U-report was again utilized to address an outbreak of typhoid in another region of the country.
Priscilla Chomba Kinywa, the innovation lead at UNICEF Zambia, spoke to techPresident from Monrovia. Within its first two weeks, 5,000 people have already opted into U-report, she says. Currently, many of the youths are not in school because of the disease and a recent U-report poll revealed that it was one of the biggest frustrations among Liberian youth. She hopes that U-report will enable them to actively participate in communicating information about Ebola, dispelling myths and increasing reports of symptoms to stem outbreaks.
Stuart Campo, who is also leading the U-report effort in Liberia, joined Kinywa on the call in Monrovia. Prior to the outbreak, the communication system and access to information was severely limited, particularly channels for the youth to engage with those in policy, says Campo. “One important point about all the solutions you are developing with local technologies is scaling,” he says. “These solutions are not just about Ebola. We want to stop and mitigate the impact of Ebola. But our interest is also to support our government counterparts in building sustainable projects. We don’t want these projects to go away after Ebola goes away.”