Acceptance
- Health-RI
date: 23-08-2024 Status: ADOPTED
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
Transparent communication is an essential element in order to increase support among stakeholders in the healthcare information landscape as well as citizens and patients. An information campaign has therefore been started within cluster 1 of the Obstacle Removal Traject, called the Wist je dat je campaign.
The first part of this campaign concerns providing objective and independent information to citizens and patients about secondary use of health data. This is currently being designed in a website called www.gegevensverbeterenlevens.nl. In addition to general information and good examples about secondary use, one can find information here about the 'as is' situation regarding security, privacy and control. The website also offers the opportunity to ask questions and consult a database with FAQs that is being built up.
Glossary
A lot of terminology is used within the healthcare information landscape, and it is often assumed that the same concept is understood. Upon inquiry, there appear to be differences of interpretation. To better ensure that we in the Netherlands have the same understanding of relevant concepts surrounding secondary use of health data, a glossary with broadly supported concepts and definitions is necessary. This glossary is a necessary condition for arriving at national principles.
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?
The upcoming work session is scheduled for the first quarter of 2024 and will take place with the OVT community. If you would like to contribute to the discussion on the national principles, we invite you to register via the attached contact form.
