Health-RI wiki v4.0 -> consultatie (open tot 03-12-2024)
Acceptance
- Health-RI
DATE: 15-11-2024 STATUS: FOR REVIEW
In order to achieve a well-functioning health data infrastructure for research, policy and innovation, defining supported principles is essential. With the aim of creating support. This is part of the Obstacle Removal Process (solution 1 and 2). This article describes how we are going to arrive at the leading national principles, a glossary and public communication and information.
Public communication
To create support among stakeholders in the healthcare information landscape as well as among citizens and patients, transparent communication is crucial. The agreements and the most recent state of affairs can be found on the following page: Public communication and information
Glossary
Within the healthcare information landscape, a lot of terminology is used, whereby the assumption is often made that the same thing is understood by a concept. When asked, it turns out that there are differences in interpretation. Currently, everyone uses his or her own definition list when drawing up reports, contracts and agreements systems. This leads to inconsistencies and confusion, as terms are often interpreted differently, depending on the context or the initiative.
In order to better ensure that we in the Netherlands understand the same thing by relevant concepts around secondary use of health data, a glossary with widely supported concepts and definitions is necessary. This glossary is a necessary condition for arriving at national principles. This joint dictionary for the multiple use of data is placed with the Thesaurus Zorg en Welzijn (TZW) of Nictiz.
Drawing up a glossary and formulating national principles is part of the first solution of the Obstacle Removal Trajectory. The glossary and national principles aim to develop a common language by establishing a shared vocabulary to prevent misunderstandings in communication with each other. The glossary is created in coordination and collaboration with other initiatives and parties, such as Nictiz, DGC-SSC and VWS. Items from the Glossary of the Health-RI wiki are included in the glossary. As soon as the glossary is operational, it will serve as a Glossary for the Health-RI wiki.
National Principles
The national principles contain descriptions of high-level principles of the health data infrastructure, their meanings and the consequences of embracing them in this system of agreements. The national principles will be in line with the current visions and initiatives such as the National Vision and Strategy on the health information system of the Ministry of Health, Welfare and Sport, the Nictiz Care and Welfare Thesaurus, the SSC-DGC glossary and other definition lists and with the vision Secondary data use of VWS.
Within the context of the national principles, five main principles are distinguished:
The five main principles are indispensable for jointly solving the current obstacles surrounding the (re)use of data.
Process
Health-RI organizes working sessions with the aim of creating a document that establishes the shared 'why' and national principles. The first internal work session took place on October 31, 2023. Different perspectives on high-level principles such as data availability, trust, interoperability and data solidarity were collected from different disciplines. The guiding “values” are always loaded with different perspectives (e.g. technical, legal, policy, ethical). What standards and guidelines result from this? What does it mean for behavior, roles, responsibilities?
If you would like to contribute to the discussion on the national principles, we invite you to register via the attached contact form.
