Agreements summary

datum: 30-04-2024 Status: FOR REVIEW

 

At Health-RI we strongly believe in the power of collaboration. We bring all relevant parties together; healthcare professionals, policy makers, patient organizations, researchers and industry. Only by building a common vision and approach can we realize the necessary health data infrastructure.

Agreements are needed to ensure that all relevant parties work together optimally in the National Health Data Infrastructure for research, policy and innovation. These agreements make it possible to collaborate, evolve and grow in a coordinated and targeted manner. The agreements concern all matters on which cooperation takes place:

• Acceptance

• Laws and regulations

• Security

• Organizational policy

• Process

• Information

• Applications and technical infrastructure

The following National Health Data Infrastructure for research, policy and innovation agreements have been established for the Health-RI wiki version 2.0:

1. Reach supported agreements

2. The architecture is process-driven and user-oriented 

3. Data is made FAIR as close as possible to the source, for multiple use.  

4. The data holder is responsible for making data suitable for multiple use.

5. Data-centric approach is used, in which data and functionality are separated from each other. 

6. Health-RI standardizes data based on unity of language, minimizing quality loss in translation layers and improving data interoperability. 

7. DCAT is used as a standard for describing metadata of datasets. 

8. Standardized API to request and make available (meta)data. 

9. New research results obtained using the Health-RI infrastructure are suitable for multiple use from the start. 

10. Generic functions are set up for both care and research & innovation, to prevent fragmentation. 

11. Unambiguous national dictionary for secondary use

12. National principles

These agreements contribute to the development of an integrated health data infrastructure within the Health-RI ecosystem, in which data is suitable for multiple use and interoperability is promoted. The design aims to ensure efficient data management, consistent processes and ensuring the privacy and security of health data. Data does not have to be brought together centrally, but it is allowed, especially if this simplifies or makes the processing of data for the research in question more efficient. Metadata is centralized in a national metadata catalogue.