Open health data: Mapping the ecosystem

Abstract

Background Governments around the world own multiple datasets related to the policy domain of health. Datasets range from vaccination rates to the availability of health care practitioners in a region to the outcomes of certain surgeries. Health is believed to be a promising subject in the case of open government data policies. However, the specific properties of health data such as its sensibilities regarding privacy, ethics, and ownership encompass particular conditions either enabling or preventing datasets to become freely and easily accessible for everyone. Objective and methods This paper aims to map the ecosystem of open health data. By analyzing the foundations of health data and the commonalities of open data ecosystems via literature analysis, the socio-technical environment in which health data managed by governments are opened up or potentially stay closed is created. After its theoretical development, the open health data ecosystem is tested via a case study concerning the Data for Better Health initiative from the government of Belgium. Results Creation and assessment of an open health data ecosystem consisting of stakeholders, interests, information policies, and data preparation activities. Conclusions The policy domain of health includes de-identification activities, bioethical assessments, and the specific role of data providers within its open data ecosystem. However, the concept of open data does not always fully apply to the topic of health. Such several health datasets may be findable via government portals but not directly accessible. Differentiation within types of health data and data user capacities are recommendable for future research.