Unlocking the Power of Health Data by Ensuring the Public can Trust the EHDS

Main Article Content

Dipak Kalra https://orcid.org/0000-0002-2998-9882

Keywords

health data, electronic health records, big data, information governance , transparency

Abstract

It is vitally important to assure public trust during the European scaling up of health data reuse for research, public health and health systems strategy. The European Health Data Space (EHDS) proposals are catalysing the multi-stakeholder debate on this, and include some provisions that are aimed at giving that assurance, such as strict purposes for which data may be reused, and which may not be used. However, the public needs a way of trusting that the organisations that reuse their data are bound to by ethical and transparency principles. Furthermore, these organisations are to be held accountable for how they use data. This paper summarises the Big Data rationale for needing a European scale for the secondary use of health data, and the provisions in the proposal for a Regulation for the EHDS to enable and safeguard this secondary use. It proposes a complementary measure, a Societal Compact, that could strengthen public trust in the EHDS.

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