TEHDAS’ proposals for promoting data altruism in the EHDS
Data altruism is about the sharing and use of data for the benefit of all, thereby making new data sources available for research and innovation. TEHDAS has developed recommendations to enable voluntary data sharing for the European health data space.
A recent report by the EU joint action Towards the European Health Data Space (TEHDAS) presents recommendations for policymakers at the EU and national level, and data altruism organisations on how to involve individuals in data sharing – data altruism – in the European health data space (EHDS).
Data altruism refers to people and organisations who voluntarily make data available in the public interest, thereby enabling new sources of data for secondary purposes such as research and innovation, without seeking reward. An example is health data gathered by an individual’s smartwatch or other smart devices. Data altruism organisations make data available on a large scale in accordance with the principles of data altruism.
The report argues that there is a need to encourage individual involvement in the EHDS and especially in data altruism. Transparency, trust and citizen empowerment are crucial elements for public acceptance. Without voluntary data sharing by individuals, there will not be enough rich data available for research, innovation and decision-making.
The report makes recommendations on how to adopt and harmonise the identified good practices for building national or European health data spaces. The recommendations include:
- Supporting digital literacy in the society. The shift towards digital tools such as smart devices or health applications for gathering and analysing health data demands attention to digital skills. Neglecting this could damage public trust.
- Data altruism organisations should provide incentives to encourage individuals and groups to participate in making health data available for public interest, such as scientific research. These incentives could include informing individuals about how their data has been used and the results of that use, and recognising their contributions.
- Data altruism organisations should ensure that high-quality and unbiased data is accessible and available. The report also recommends that they cooperate with academic institutions, non-profits and charities to share best practices.
- The public and private sectors should increase collaboration to provide richer datasets for research.
- Guidelines for data altruism should be prepared in cooperation with a wide range of stakeholders, such as data altruism organisations, data holders and private sector organisations. The Data Governance Act defines that common rules need to be developed for data altruism organisations, such as a common consent form.
- Trust on health data altruism organisations depends on their accountability. An essential element for building trust is citizens’ and patients’ control over their data, as well as transparency about how and with whom health data is shared, and what the benefits and risks of data sharing are.
The recommendations are based on applicable legal instruments, especially the General Data Protection Regulation (GDPR), the Data Governance Act (DGA) and the EHDS, and they are in line with the views of stakeholders.
This concludes the work of TEHDAS on data altruism.
The report has been approved by the project steering group. The European Commission gives final approval to all joint action’s deliverables.