Summer Academy for Global Privacy Law 2024
Data spaces: ‘What is a trustworthy data sharing environment?’
On 4 July 2024, Dr Laura Carmichael (SYNTHEMA WP5) and Dr Steve Taylor, both from the IT Innovation Centre part of the Digital Health and Biomedical Engineering Group at the University of Southampton, gave a lecture and ran a workshop on the subject ‘What is a trustworthy data sharing environment?’ at the Brussels Privacy Hub 2024 Summer Academy for Global Privacy Law.
This year’s Summer Academy (1-5 July) took place in-person at Vrije Universiteit Brussel (VUB) located in Brussels, Belgium — and focused on the topic “The Future of Data Protection: Navigating Between Data Regulations, Data Spaces and Data Dogmas”.
The 1-hour lecture explored the notions of trust and trustworthiness in relation to ‘controlled access data environments’ with specific focus on healthcare applications, and provided an exemplary case study on simulation of privacy risks in secondary processing of de-identified health and social care data using Spyderisk — a semi-automated risk assessment tool.
The 2-hour workshop was attended by 17 participants taking part in the Summer Academy. The principal aim of the workshop was to elicit participants’ views about health and social care research being facilitated by controlled access data environments.
One of the workshop activities asked participants to split into three groups to discuss two scenarios. The first scenario centred on the secondary use of data for health and social care research where each group represented either patients, platform facilitators or researchers. The second scenario focused on data donation for health and social care research where each group represented either individuals donating data, platform facilitators or researchers.
These topics are fundamentally related to SYNTHEMA, as data privacy is a crucial aspect of the technology the project is developing to counteract against the data silos in the heamatological diseases medical field. In fact, IT Innovation are also working in the NEMECYS and DS2 projects which research medical scenarios, and data spaces and so all three projects are involved.
We would like to thank the Summer Academy for Global Privacy Law 2024 organisers and all those who attended the lecture and workshop for their participation.
References
Affleck, P., Westaway, J., Smith, M., & Schrecker, G. (2022, November 14). Trusted Research Environment – a name to trust [blog]? Forum: Journal of Medical Ethics. Available at: https://blogs.bmj.com/medical-ethics/2022/11/14/trusted-research-environment-a-name-to-trust/ (Accessed 8 July 2024).
Brussels Privacy Hub. (2024). Summer Academy For Global Privacy Law 2024. The Future of Data Protection : Navigating Between Data Regulations, Data Spaces and Data Dogmas. Available at: https://brusselsprivacyhub.com/education-training/summer-academy-for-global-privacy-law-2024/ (Accessed 8 July 2024).
Spyderisk Open Project on GitHub. Available at: https://github.com/Spyderisk (Accessed 8 July 2024).