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Open Data and Public Health

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Open Data and Public Health Pan American Journal Review of Public Health Open data and public health Marcelo D’Agostino,1 Noah O. Samuel,2 Maria Janina Sarol,2 Federico G. de Cosio,1 Myrna Marti,1 Tianyu Luo,3 Ian Brooks,2 and Marcos Espinal1 Suggested citation D’Agostino M, Samuel NO, Sarol MJ, de Cosio FG, Marti M, Luo T, et al. Open data and public health. Rev Panam Salud Publica. 2018;42:e66. https://doi.org/10.26633/RPSP.2018.66 ABSTRACT This article provides an overview of the intersection of open data and public health by first defining open government data, public health data, and other key concepts and relevant termi- nologies. There are differing perceptions on the urgency and importance of the openness of public health data. It has been established that disease outbreaks such as happened during the Ebola and Zika virus epidemics are indicative of the need for countries to develop a framework that will provide guidance for the management of public health data. Such a framework should ensure that data collected during public health emergencies are accessible to the appropriate authorities and in a form that can help with timely decision-making during such public health crises. In this article, we highlight available open data policies across many countries, includ- ing in the Americas. Our analysis shows that there are currently no articulated policy guide- lines for the collection and management of public health data across many countries, especially in Latin America. We propose that any national data governance strategy must address poten- tial benefits, possible risks, examples of data that could be shared, and the attributes of such data. Finally, we stress that the key concern in the Americas should be the development of regional frameworks for open data in public health that can be adopted or adapted by each coun- try through appropriate national or subnational policies and strategies. Keywords Information systems; data sources; public health; health systems; confidentiality. In this article, we provide some basics public for free, and in formats that al- to base decisions point to the need for about open data and open health data in low a variety of uses. open public health data. particular, and we discuss how these “Open data” is a general umbrella Documented and openly shared pub- concepts apply to the public health sec- term that is used to describe all forms of lic health data can help to prevent cata- tor. Open data as a concept is widely data made available to the public for strophic events. Such data can also help applicable in various sectors, and its im- free. Public health data should be in- health researchers and, by extension, en- portance has been articulated in the ex- cluded in this category. Unlike personal hance the health of a city, a state, a na- tant literature. Governments around the health data (whose improper release tion, or the world at large. world are already creating policies to might violate an individual’s privacy), The drive for data openness is gaining enhance data openness by providing public health data are often aggregated impetus in various quarters. For exam- detailed descriptions of how data relat- information that can help in making de- ple, the concept of openness has built ing to public welfare should be man- cisions regarding health issues. The ad- noticeable strength within the technol- aged. There is growing emphasis on vantages and benefits that can accrue ogy environment, with a focus on open making these data available to the from having appropriate data on which source application development and 1 Pan American Health Organization, Washington, 2 School of Information Sciences, University of 3 School of Information Studies, Syracuse D.C., United States of America. Send correspondence Illinois at Urbana-Champaign, Champaign, Illinois, University, Syracuse, New York, United States of to Marcelo D’Agostino, at [email protected] United States of America. America. This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs 3.0 IGO License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited. No modifications or commercial use of this article are permitted. In any reproduction of this article there should not be any suggestion that PAHO or this article endorse any specific organization or products. The use of the PAHO logo is not permitted. This notice should be preserved along with the article’s original URL. Rev Panam Salud Publica 42, 2018 1 Review D’Agostinoetal.•Opendataandpublichealth code sharing. The scientific community KEY CONCEPTS AND of data by the citizens in ways that create has also been pushing for open access to TERMINOLOGIES additional usefulness; and (c) participa- scholarly work, and a few initiatives tory governance, ensuring that citizens have been launched in the past few years Open data have access to data upon which govern- to support this (1). In addition, govern- ment decisions are based. ment agencies around the world are cre- Although the term “open data” seems Some initiatives measure government ating policies to enhance access and use intuitive and self-explanatory, individu- performance around the world regard- of government data by the public at als and organizations may have different ing OGD. large (2). conception of openness. Some concepts The seven countries that ranked high- In the research literature, there are dif- and principles relevant to some sectors est in the 2016 Global Open Data Index ferent viewpoints on the urgency and may not apply to other sectors. For in- (GODI), which is run by the Open the importance of the concept of open- stance, the Project Open Data of the Gov- Knowledge Network, were Taiwan, Aus- ness of public health data. For example, ernment of the United States of America tralia, Great Britain, France, Finland, it has been established that disease out- states that open data must be managed Canada, and Norway. These seven coun- breaks such as happened during the after being released (7). This principle tries were ranked from one to five, with Ebola and Zika virus epidemics are in- applies to academic research projects, two or more countries occupying the dicative of the need for countries to de- but they are usually only required to same position. Taiwan occupied the first velop a framework that will provide keep the data for a few years after the position, followed by Australia and guidance for managing public health end of the project. Great Britain sharing the second posi- data. Such frameworks should ensure A widely used definition of open data tion. France is fourth, while Finland, that data collected during public health is the Open Definition, which states that Canada, and Norway all shared the fifth emergencies are accessible to the appro- “open data and content can be freely position (11). priate authorities and in a form that can used, modified, and shared by anyone Some of the data areas on which the help with timely decision-making dur- for any purpose” (8). It is important to GODI assesses openness are: national ing such public health crises. Carney note that this definition is not applicable statistics, government budget, legisla- and Weber (3) have stated that “today’s to government and public health data. It tion, procurement tenders, elections re- public health crises, as exemplified by is crucial that public health data shared sults, national maps, weather forecasts, the Ebola outbreak, lead to dramatic by the government should not be modifi- air quality, company registers, location calls to action that typically include im- able. Thus, in this paper, our definition of datasets, water quality, land ownership, proved electronic monitoring systems to open data is a slight variation of the and government spending. Public health better prepare for, and respond to, simi- Open Definition. We define open data as data is currently not included in this list. lar occurrences in the future.” Having data that can be freely used and shared It is noteworthy that among the top 20 data-driven public health intelli- by anyone for any purpose, under strict countries with high OGD scores, based gence-gathering is only possible if the principles of privacy and confidentiality, on the 2016 Global Open Data Index required data are available and are be- when appropriate. (GODI), 7 of them are in the Americas. ing shared. These 7 countries are Canada, Brazil, Vest and Issel (4) have asserted that Open government data Mexico, United States, Colombia, Argen- there is a need for improved information tina, and Uruguay. system capabilities in public health agen- Around the world, governments and Available studies already show the cies and that these capabilities may be quasi-governmental entities collect mul- kinds of benefits that accrue when citi- the key to those agencies remaining rele- tiple categories of information, including zens utilize openly available government vant in evolving health care systems. on people, events, institutions, and data. For example, Bătăgan demon- There are also increased calls for inte- the environment. With new information strated how open government data could grating public health surveillance data and communication technologies—espe- enhance development in urban areas within health departments. The cost cially the Internet—it is now easy to store (12). In a similar study, a group of Finn- efficiency of such an approach to the this information in online databases. Ac- ish researchers looked at the Helsinki Re- coordination of care can be striking (5). cess to most of these databases was often gion Infoshare open data service and In managing public health data, various initially restricted to certain agencies of concluded that “open data can signifi- factors across different agencies have the government involved in collecting cantly contribute to open government been considered.
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