Injecting Open Data into the Fight Against Ebola
An open, collaborative effort empowers West African healthcare with effective information and governance
The outbreak of the Ebola virus in West Africa has demonstrated that any country with weak healthcare can endanger the world. But the West African nations of Guinea, Liberia, and Sierra Leone don’t have weak healthcare systems because of poorly trained caregivers and inadequate or substandard facilities. Although the facilities may be underfunded, the medical staffs are excellent. There are international aid groups moving doctors, nurses, and supplies through the region on a regular basis to fight malaria, typhoid, and many other common tropical diseases. What was missing when Ebola hit West Africa in early January 2014 was quality information about health capacity across the region, communication and coordination, governance, and practiced procedures on how to handle epidemics and health emergencies.
Local hospitals were left on their own to address the challenges of the Ebola outbreak during the first six months of the crisis. In Sierra Leone, the national government in Freetown didn’t recognize the outbreak as a national emergency until July 30, when President Ernest Bai Koroma declared Ebola a “State of Public Emergency.”1 During the next six months, medical supplies were rushed into the region, but their dissemination was uncoordinated. Inventories were not logged, training was not provided, and comparative success and failure experiences were not shared. Each institution was fighting Ebola on its own, backed up by retreating international aid agencies and later military deployments by the United States and Great Britain.
A sad reality
News reports near the end of 2014 documented the grim effects of the outbreak. One report on the Ebola outbreak in Sierra Leone showed a family transporting a family member stricken with Ebola in an automobile and searching for a hospital with a free bed. They searched for four days and were turned away from every hospital they found. The man had bloodshot eyes and could barely sit upright. He drank water slowly while his sister angrily pleaded for help, only to be told they had to drive on. No one from the hospital would venture out to examine the man, who sat in the back seat of a dusty sedan, next to his brothers and sisters who would surely become infected, too. As the reporter closed out the report, she informed viewers that the man never found a treatment center with a room, and he died a few days later.
None of the hospitals this man and his family visited had any information about available treatment facilities at other hospitals. They communicated one-to-one through cell phones over spotty connections. Some had laptops, but Internet connections were too slow to be reliable. Even though hundreds of ambulances had been sent to the region to help ferry patients to hospitals, many were instead being used to dispose of the dead while others were unaccounted for. There was neither accurate information about when beds might become available and what families should do to help afflicted family members, nor how they should protect themselves from infection.
Stories from West Africa such as the one just described may not be surprising to many. Some might conclude, “Well, that’s Africa after all.” However, Africa is by no means backward today. Many countries on the African continent have mobile communications infrastructures that rival many European nations. And with cloud computing providing inexpensive technology resources to the region without the need for local infrastructure and maintenance skills, there is no reason why West Africa can’t have the best health information systems and governance in the world. It just has to be built.
An open vision
Sadly, information and records management have not been primary investment choices of African nations, and historically many international organizations have better information about the healthcare capabilities of West African nations than the nations do themselves. But the Africa Open Data Group has a vision of effective healthcare information and governance, and had it been in place at the start of the crisis, Ebola could very well have been a short-term trauma. The few isolated cases would have been dispatched quickly thanks to effective communication and coordination. Fear would not have crippled the economies, and the public would gain renewed confidence in its health institutions and central governments.
The young man in the previously related news story about his family's search for treatment would have experienced the first symptoms of Ebola at home. His family would have been able to call a government hotline to report the symptoms, and the call would have been immediately routed to a local hospital based on the call data record (CDR) of the family’s cell phone. The local hospital would have provided advice on how to provide fluids to the patient, recommendations on what family members should do to protect themselves from infection, and notification on when a treatment bed would be available in which facility.
Moreover, a support team would immediately have sent an ambulance to provide protective gear for the family while they waited for treatment. The incident would have been reported to a central incident-tracking database, where all future interactions with the patient would be recorded. The staff at the local hospital, having already been trained in epidemic-handling procedures, would have donned protective suits and readied an isolation ward for the incoming patient.
In addition, notices would have been sent out immediately to all the other neighboring hospitals and government administrative offices alerting them of the incident. Everyone would be warned of potential additional cases, and a local epidemic risk assessment would be performed and compared against the most recent inventories of patients, beds, practitioners, and supplies. Using statistical models, computer systems would have been able to forecast the impact of additional patients on the existing health capacities, and plans would have been put in place for new isolation wards. Altogether, an epidemic could have been contained methodically and quickly.
This crisis has demonstrated that people worldwide are all one plane trip away from health emergencies, and every nation with a weak healthcare information infrastructure is a contagion hazard to the world. Today, humankind has a vested interest in making effective health information governance ubiquitous.
A broad first step
Just beyond one year since Ebola first broke out in West Africa, there is today a huge gap between the explosion in the number of reported cases and the capacity of treatment centers. No one really knows how many people need treatment and how many care units can treat them. There is not enough information available, and people often must travel on their own or with family and friends to find hospitals. This practice endangers their own health and everyone who comes into contact with them. Hospitals are not communicating with each other and coordinating capacity and care.
February 21, 2015 marked the first step forward to achieving the information and governance goal in West Africa through an Ebola Open Data Jam, an event that took place in New York and Washington DC in the US; London in the UK; Freetown, Sierra Leone; and Kampala, Uganda. The initiative collected detailed information that described the healthcare capabilities of West Africa.
Jam organizers sought public and private sources of information about each hospital and clinic, the number and type of beds, doctors, nurses, support staff, ambulances, helipads, transportation conditions, medical equipment, supply chains, power generation, Internet bandwidth, and available treatments. The hope is to combine structured and unstructured information, photos, videos, and audio recordings into many open data files and present them to West African governments. The files serve as an international gift to empower their nations to become masters of their own health information.
No person or organization has undertaken this kind of initiative on this scale before, and the Africa Open Data Group is working in a broad international coalition of partners. They include the following organizations along with many others:
- Centers for Disease Control (CDC)
- The International Committee of the Red Cross
- Open Government Partnership (OGP)
- United Nations (UN) Global Compact
- UN Mission for Ebola Emergency Response (UNMEER)
- United States Agency for International Development (USAID)
- The World Bank
- World Health Organization (WHO)
The aim is to be widely inclusive and spread the knowledge to show nations what to do with the data and how to use the data to spread self-awareness and improve governance and communication.
A key goal is to help the people of West Africa to develop their own open data repository of healthcare information and become effective frontline guardians of world health. Cloud computing technologies from IBM enable setting up a robust open data platform for West Africa—and any country in Africa. NuCivic—provider of a suite of open source software-as-a-service (SaaS) solutions to help governments and nonprofit organizations manage open data—plans to provide the open data portal. NuCivic will team with UNMEER to provide technical training and education. And the American Bar Association (ABA) is providing pro bono legal support to verify open data license terms and ensure the government is publishing data correctly. Many more parties that can help with their unique skills are needed.2
Open data can help West Africa improve healthcare through open communication, government, and transparency as well as assist with economic development. It can provide the people of West Africa with new information resources that help it master its own destiny. The hope is that this example helps other African nations copy and complete the vision of an Africa that is aware of its capabilities for leveraging data to grow and flourish.
Please share any thoughts or questions in the comments.
1 “Address to the Nation on the Ebola Outbreak by His Excellency, The President Dr. Ernest Bai Koroma,” State House, the Republic of Sierra Leone, July 30, 2014.
2 Anyone wishing to participate and make a contribution, please join the Africa Open Data Group, and RSVP to participate in one of the event locations or volunteer to organize in a new location.