Data accessibility doesn’t mean they’re fit for purpose: on the importance of domain knowledge in the implementation of a Dutch Health Data Access Body

The European Health Data Space (EHDS) offers a unique opportunity to use health data for research, policymaking, and innovation. EHDS primarily focuses on improving data availability. However, especially when it comes to healthcare data itself (electronic health records, claims data), data availability does not automatically mean that data are fit for purpose.

To also promote fitness for purpose, it is essential that existing, expert, and trusted data holders — such as Vektis, DHD, Nivel, and IKNL — are given a role in the new governance and data-access model under EHDS.

These organizations possess extensive domain knowledge, proven data quality procedures, and established relationships with stakeholders such as healthcare providers, patients, insurers, and software vendors. Their understanding of the possibilities and limitations of data is necessary to judge whether data are suitable for a specific purpose. Preserving and mobilizing this knowledge within the governance structure yet to be established is a prerequisite for ethical, reliable, accurate, and efficient data use.

This open letter is a joint response by Nivel, Vektis, DHD, and IKNL to an invitation from HDAB-NL to contribute ideas regarding the further development of the Dutch Health Data Access Body.