Fair.healthdata.be is the open data platform of the department healthdata.be of the Sciensano. The mission of healthdata.be is to facilitate the data exchange between healthcare professionals, patients and researchers according to the only once principle and the re-use of data, in order to increase public health knowledge and to adjust health care policy, with respect for the privacy of the patient, the healthcare professional and the medical confidentiality.
High registration burden in a scattered landscape
In today’s Belgian healthcare system, many data flows with different finalities co-exist: administrative data flows, data flows regarding the continuity of care, the traceability of a disease, drug or implant as well as data flows regarding the quality of care. The latter are typically organized in scientific data collections – the so called “registries”. Over the past decades, many registries have been created, leading to a substantial registration burden for many of the involved data providers, ranging from large hospitals to individual doctors. These registries are furthermore characterized by a large degree of heterogeneity.
The eHealth Action Plan 2013-2018
These concerns gave rise to a round-table conference, leading to the eHealth Action Plan 2013-2018. One of the priorities of this plan - the rationalization of patient registries (Action Point 18) - was entrusted to healthdata.be, a new department established at the Sciensano (previously known as Scientific Institute of Public Health (WIV-ISP)).
The "AP18" Inventory
One of the priorities of Action Point 18 of the eHealth Action Plan 2013-2018 is the establishment of an inventory of all publicly funded primary and secondary databases with public health data, how they are organized and exactly what information they collect and publish. More than 150 databases were identified. Their owners received a detailed questionnaire. The responses were verified, together with the Belgian Health Care Knowledge Centre (KCE), and integrated in a web application. The open data platform fair.healthdata.be replaces this website and will add as much as possible data sources and references related to Belgian public health and health care.