TEHDAS probes matrix of data altruism definitions
The new report of the Joint Action Towards the European Health Data Space (TEHDAS) examines the different definitions of data altruism, which means individuals and organisations actively consenting to make their data available for the common good.
Individuals can already consent to share their electronic health records, but in the future data altruism can make available new data sources for research and innovation. An example is data gathered by an individual’s smartwatch or other smart devices. Without the consent of the individual concerned, this data may not be accessed and used for such things as research.
Based on a literature review, the report concludes that different terms are being used to describe the active participation of individuals in data sharing, with data altruism being one of them. The report also highlights a few case examples for the European Health Data Space on enabling data altruism.
The report identifies 12 factors that illustrate the complexity and diversity of data altruism. They include: the variety of data subjects such as patients or organisations, the scope of the consent can vary from one-time consent to giving a consent for multiple different purposes at a time, and value for data subjects for sharing data, such as being informed about how the data used benefitted research.
The European Commission addresses data altruism in the Data Governance Act, which aims to strengthen data sharing across the EU. This shows that data altruism is slowly gaining strength in Europe and therefore TEHDAS work package 8 will continue to further analyse its role in individuals’ participation and empowerment in the health sector.