K2SP 3555 - Rethinking Data Governance for Health System Innovation

This course aims to shed light on the challenges and opportunities of data-driven innovation in health systems. It will introduce key concepts , address recent trends , the evolving health data ecosystem in the context of new technological developments and data sources, the challenges for regulation, and what makes the governance of health data a specific case. The course will examine the underlying issues inhibiting greater access to and sharing of health data. Using concrete examples and case studies, the course will discuss policy, technological and organisational issues; trends in regulatory innovation with a particular focus on privacy , cybersecurity and data protection ; the challenges emerging from the use of artificial intelligence in health and recent developments such as the European Health Data Space ; the growing role of data intermediaries; data altruism , data ethics and data sovereignty as well as user-centric approaches for greater control and ownership over personal health data. Through lectures, group work, discussion and debate, including with invited experts, students will sharpen their knowledge of key challenges in data governance and the policy trade-offs that need to be tackled both at the international and national levels to maximise the benefits of data, unlock its value and drive health system innovation.
Elettra RONCHI
Cours magistral seul
English
Each session requires students to complete assigned readings (about 1-2 articles per session) and come prepared to discuss case studies.
Students should have a good written and oral knowledge of the English language, sufficient for reading and understanding complex texts.
Autumn 2025-2026
Team work presentation and responses to case studies (20%) Individual participation in class (20%) Oral short presentation of the Essay's topic (10%) Essay of 4000 words (8 pages) (50%)
Lectures will be structured as follows: • Setting the scene and introduction- review of key notions • Remote or in-person intervention of an external expert, followed by discussion • Presentations by students and discussion of a relevant article/ case study/webinar or team work
Selected chapters from: OECD (2019) Health in the 21st Century : Putting Data to Work for Stronger Health Systems, OECD Health Policy Studies, OECD Editions, Paris, Available at: https://doi.org/10.1787/e3b23f8e-en .
Rajpurkar, P., Chen, E., Banerjee, O. et al. AI in health and medicine. Nat Med 28, 31–38 (2022). Disponible / Available at https://doi.org/10.1038/s41591-021-01614-0
Meskó, B., Topol, E.J. The imperative for regulatory oversight of large language models (or generative AI) in healthcare. npj Digit. Med. 6, 120 (2023). https://doi.org/10.1038/s41746-023-00873-0
Panagopoulos, A., Minssen, T., Sideri, K., Yu, H., & Compagnucci, M. C. (2022). Incentivizing the sharing of healthcare data in the AI Era. Computer Law and Security Review, 45. Disponible / Available at https://doi.org/10.1016/j.clsr.2022.105670
van Kessel R, Wong B L H, Forman R, Gabrani J, Mossialos E. The European Health Data Space fails to bridge digital divides BMJ 2022; 378 :e071913 doi:10.1136/bmj-2022-071913
Selected sections from: Ethics and governance of artificial intelligence for health: WHO guidance. Geneva: World Health Organization; 2021. Available at https:// www.who.int/publications/i/item/9789240029200
Open Data Institute Report: Secondary Use of Health data in Europe. London, 2021. Available at: http:// theodi.org/wp-content/uploads/2021/09/Secondary-use-of-Health-Data-In-Europe-ODI-Roche-Report-2021-5.pdf?trk=public_post_comment-text
Selected sections from: Tiago Cravo Oliveira Hashiguchi , Luke Slawomirski and Jillian Oderkirk (2021) Laying the Foundations for Artificial Intelligence in Health- OECD Health Working Paper No. 128- Available through the OECD Website at http://www.oecd.
Vayena E, Dzenowagis J, Brownstein JS, Sheikh A. Policy implications of big data in the health sector. Bull World Health Organ. 2018 Jan 1;96(1):66-68. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791870/pdf/BLT.17.197426.pdf
van Kessel R, Wong B L H, Forman R, Gabrani J, Mossialos E. The European Health Data Space fails to bridge digital divides BMJ 2022; 378 :e071913 doi:10.1136/bmj-2022-071913
Selected sections from: de Bienassis, K., et al. (2022), "Health data and governance developments in relation to COVID-19: How OECD countries are adjusting health data systems for the new normal", OECD Health Working Papers, No. 138, OECD Publishing, Par
Rajpurkar, P., Chen, E., Banerjee, O. et al. AI in health and medicine. Nat Med 28, 31–38 (2022). Disponible / Available at https://doi.org/10.1038/s41591-021-01614-0
Meskó, B., Topol, E.J. The imperative for regulatory oversight of large language models (or generative AI) in healthcare. npj Digit. Med. 6, 120 (2023). https://doi.org/10.1038/s41746-023-00873-0