Data Altruism – Secondary Use of Health Data in the Public Interest based on the example of the Austrian Health Data Donation Space

The Data Governance Act incorporates the concept of data altruism. Data altruism enables individuals to make their data accessible for use in the public good on a voluntary basis, thereby presenting an alternative to secondary data use without consent. This workshop explores the possibilities, risks and mechanisms of data altruism in relation to health data, incorporating experiences from the Smart FOX research project. The Austrian Health Data Donation Space (researched and developed in Smart FOX) will serve as a case study, showcasing how individuals can contribute their health data for research and innovation leveraging health data altruism to drive advancements in healthcare, disease prevention, and public health policy. Motivations to make data accessible clash with privacy and data protection concerns and will be discussed from the patients’ perspective. Additionally, new European legislation meets established national legal frameworks, that often are more restrictive on data use, in particular when it comes to the use of electronic health data in Austria. Finally, not only national legislation and policy may have to be adapted, but also technical infrastructures have to be developed. These ethical, legal, and technological frameworks will be discussed. The session is designed for stakeholders from healthcare, research, and policy sectors who are interested in the intersection of data governance and societal impact.

Questions for Discussion:

  • How can the concept of data altruism facilitate sharing of health data for research purposes?
  • What is data sharing in the “public interest”?
  • What challenges does the data altruism concept of the DGA pose for the Austrian legal framework?
  • What are patient views on data donations/making data accessible? What are the motivations and what are the concerns?
  • How can we create trustworthy and legally compliant technical infrastructures?