Healthdata.be

Facilitate and standardise the recording of health data to increase research effectiveness

The healthdata.be services are part of the scientific directorate ‘Data Governance’ of Sciensano. The primary focus of healthdata.be is the implementation of the multiple e-Health Action Plans (latest version 2022-2024 available here). We develop and maintain the platforms for data collection and reporting, hereafter called HD4DP2 and healthstat.be. The objective is to collect all the relevant data related to a specific topic and available at participating healthcare organizations such as hospitals, laboratories, general practitioners, into a single registry. Healthdata.be provides as such an infrastructural system allowing the  investigation of  health(care)-related data in Belgium. Regardless of the topic, the data are collected and stored by healthdata.be in a uniform and secure manner.

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Healthdata.be brings data together that is typically scattered across different healthcare organizations. In doing so, we improve the standardization of the data and reduce the heterogeneous nature of captured data. 

Healthdata.be offers a data collection platform, called HD4DP2, allowing the healthcare providers to register their data, either manually via a standardized form or automatically via upload of data by sending a CSV file on a Secure File Transfer Protocol (SFTP) or via System to system Application Programming Interface (S2S API). The guidelines describing the functional and technical characteristics of this platform and the applicable register are made available in docs.healthdata.be to all healthcare actors. 

The data we collect are available to organizations with the required authorization to monitor diseases or medical actions and may be used for different purposes : 

• The collected data may be useful to improve the quality and management of our healthcare system
• In some cases registers are developed in the frame of investigating reimbursement strategies
• Healthcare organizations participating as data provider might also be interested in benchmarking reports
• National and international public health organizations and academic investigators are the driving forces for the development of multiple registries for surveillance purposes

Healthdata.be guarantees absolute confidentiality when the data are disseminated for research purposes as they are systematically encoded and/or aggregated before they are made available to third parties.  

Healthdata.be additionally offers the Healthstat.be portal: an externally accessible web environment in which reports based on the data collected can be made available to the various care actors, depending on their area of competence.  

Finally healthdata.be offers a centralized catalogue of available registries via the FAIR portal (Findable-Accessible-Interoperable–Reusable). 

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The healthdata.be project websites:​

• Entity Access Management portal 
• Documentation of HD registries and applications
• Data Collections in Architecture 1 .
• Healthdata.be reports (Healthstat)
• FAIR portal
• Service Desk portal​

New registries in production for HD4DP2

More registries

Project code	Registry name	Release date	Project coordinator
HDBP0245	Heart valves	01.05.2023	RIZIV-INAMI
HDBP0244	Real-world data collection on the diagnosis, disease course and outcomes for patients suffering from PROgressive Fibrosing Interstitial Lung Disease (RPROFILD)	04.04.2023	Boehringer Ingelheim
HDBP0012	Quality Electronic Registration of Medical acts, Implants and Devices: Coronary Angioplasty (ANGIO)	01.04.2023	RIZIV-INAMI
HDBP0016	Quality Electronic Registration of Medical acts, Implants and Devices: Pacemakers (PACEMAKER)	01.04.2023	RIZIV-INAMI
HDBP0386	Quality Electronic Registration of Medical acts, Implants and Devices: Orthopedic Prosthesis Identification Data: Hip (Orthopride Hip)	01.03.2023	RIZIV-INAMI
HDBP0288	Quality Electronic Registration of Medical acts, Implants and Devices: Orthopedic Prosthesis Identification Data: Knee (Orthopride Knee)	01.03.2023	RIZIV-INAMI
HDBP0048	Quality Electronic Registration of Medical acts, Implants and Devices: Orthopedic Prosthesis Identification Data: Total femur (Orthopride Total femur)	01.03.2023	RIZIV-INAMI
HDBP0001	Belgian Cystic Fibrosis Registry (BCFR)	02.02.2023	Sciensano
HDBP0008	Central Registry for Rare Diseases (CRRD)	19.01.2023	Sciensano
HDBP0240	Mandatory registration of Spine Surgery (Spine Surgery)	01.01.2023	RIZIV-INAMI

New releases regarding HD4DP2  

More releases

Project code	Registry name	Release date	Type of update
NA	Nextgen	09.01.2024	v4.4.2
NA	Entity Access Management (EAM)	01.2024	EAM v3.0