Principle 3: Data solidarity

DATE: 15-11-2024 STATUS: FOR REVIEW

 

Data solidarity could be seen as a fundamental principle of our healthcare system and for data availability.

In addition to technical, legal, organizational and ethical aspects, data availability also has a cultural component: the willingness to share data for the greater social interest - or data solidarity. Because data reuse for research, policy and innovation often does not provide direct individual benefit, the willingness to make data available will not arise automatically. Awareness among citizens and patients and other stakeholders, such as healthcare providers and researchers, is an important part of this principle. It is therefore also related to proper information and communication about this (public communication and information solution 2 Cluster 1 Obstacle Remove Pathway).

But do we all understand this concept the same way and what are the consequences of adopting data solidarity as a principle for data holders, for example? If data has no legal ownership, what is solidarity asked for? What does this require of our thinking about data availability? How does this concept relate to trust and safety as a principle?