JLI debate on Data, Health and Care

Can ‘big data’ be used to create a better world? Moreover, is it ethical to choose privacy over quality when we decide not to use data for social innovation? The first episode of debates by a collaboration between De Balie and the Joep Lange institute of September 5th focuses on the risks and benefits of the use of big data in the field of healthcare and is introduced by Michiel Heidenrijk. The panel consists of Jerome Singh (Head of Ethics and Law at the Centre for the AIDS Programme of Research in South Africa) Dianda Veldman (director of the Patient Federation Holland), Francois Venter (Deputy Executive Director of the Wits Reproductive Health and HIV Institute at the University of the Witwatersrand) and  Prof. dr. Roel Coutinho, Department of Epidemiology, UMC Utrecht.

The potential for data to improve health seems unlimited. At the same time, people are reluctant to embrace the opportunities of data in health and are concerned about their privacy. In the opinion of Roel Coutinho ”Big data can be extremely useful, but you have to think carefully about what you want to do with it and what you want to collect.” Health apps by example can support healthy lifestyles but collect data in return. What will happen with that data? Will it be used for social innovation or can it also be used for something else? One of the biggest challenges to Jerome Singh is harm versus potential benefits of collecting data in health: ”Ownership of healthcare data is not the issue; it is about jurisdiction and governance.” According to Francois Venter, these are very exciting times. ”We can push data to mobile phones, empowering patients to take charge of their health. Not using data would therefore be a huge missed opportunity, but it is naive to just hand over your data to benevolent governments.”