Today AcademyHealth announced Sarah Telford and Ahmadou Dicko as the winners of this year’s Health Data Liberator award. The award recognizes their work on the Humanitarian Data Exchange (HDX), an open platform for sharing humanitarian data to help increase the use and impact of that data.
“In crisis situations, access to meaningful data can be the difference between life and death,” said Dr. Lisa Simpson, president and CEO of AcademyHealth. “Seeing the way HDX increased awareness around a global health crisis like the Ebola outbreak only underscores the importance of not just access to data, but access to tools that make sense of that data in compelling ways.”
Launched in July 2014 by the United Nations Office for the Coordination of Humanitarian Affairs (OCHA), HDX now includes more than 6,000 data sets from nearly 1,000 sources covering 245 locations around the world. In addition to the data sets, HDX also provides several tools to aid in data tagging and visualization through maps, graphs, and interactive dashboards that can be used locally.
“The idea behind HDX is simple – to make it easy to find and use humanitarian data,” said Telford, director of OCHA’s Centre for Humanitarian Data which houses HDX. “We are grateful to our partners for sharing their data through the platform and look forward to bringing more sources together within and across crises to improve decisions and save lives.”
The platform had been live for only a few months when the UN mission for the Ebola outbreak in West Africa used it as the official reference for data on the crisis. In January 2015, The New York Times used data from the platform in their reporting on the Ebola outbreak, putting the outbreak and efforts to address it in front of global audience. Since then, the team has been working to enhance the platform in several ways, including by increasing access to health data. Early last year, the team launched a Data Lab in Dakar, Senegal, to speed up the flow of data across West Africa. As leader of that lab, Dicko said the team has been working on data integration and visualization of global health sites. This work has also involved efforts around cholera outbreaks and making sure NGOs get the right data at the right time.
“The data I got from HDX was very useful. It allowed me to quickly map cholera cases and get the location of health centers to prepare my data collection in the field,” said Franck Alé of Médecins Sans Frontières (MSF, known in English as Doctors Without Borders) in Senegal.
Telford noted the importance of having people on location for the long-term as part of the relationship building process.
“It’s not just about data sharing,” Dicko said, emphasizing the importance of a physical presence in Dakar. “Much of getting to the point where data sharing happens is building trust between stakeholders. NGOs work very hard to collect data and they want to ensure that data is protected and used appropriately. One of the ways we address this is by offering the option to publish metadata with the underlying data available by request.”
The Health Data Liberator Award, presented each year at Health Datapalooza, recognizes extraordinary contributions to the liberation of health data that fosters improvement in the health care system. Prior recipients include Tom Delbanco and Jan Walker of OpenNotes (2017); Fred Trotter, CEO, DocGraph (2016); Niall Brennan, former director and chief data officer, Centers for Medicare & Medicaid Services (2015); Charles Ornstein, senior reporter, ProPublica (2014); and Nirav Shah, senior Vice President and Chief Operating Officer, Kaiser Permanente (2013).