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Session 6 | A Data Culture for Society to support health data re-use at scale? An exploration

This session reflected on the conditions required for a data-altruistic culture. To facilitate re-use of health data at scale, a health and care system needs a Data Culture for Society. Such a culture would establish a sound collaborative environment built along a C2B2B model (with C for citizen as data subject; the first of the two Bs is B is for Business as a data provider, while the second B is for Business as a data user). To achieve this ambition, a trustful relationship is needed between citizens and businesses, including with those organisations that provide access to citizens’ health data and those that will use the data. It focused on the importance of working with the entire ecosystem and building data ethics together. Polls, including ePolls, can help to understand people’s/citizen’s viewpoints: here, artificial intelligence (AI) can certainly help.

The first speaker was Wannes Van Hoof of public health institute, Sciensano, Belgium. In the context of the European Health Data Space upcoming directions, Mr Van Hoof  reported on the results of a 6,000-strong eConsultation survey response organised by the TeHDAS Joint Action –with a focus on trust and data as a relationship. The importance of data to be used for the “common good” emerged as a really strong issue for many of the survey respondents; trust also. The main argument presented was that data needs to be joined up in order to be meaningful. Levels of trust may differ, of course, depending on whether the data is being held by the public sector or private sector, or a mix of players from both sectors.


Second speaker, Nesrine Benyahia of Dr Data, France, a data protection organisation, spoke of her company’s several years of experience in France, and with French hospitals, of “freeing” health data while making it safe as well as protected. She examined the educational, communication, ethical ecosystem, and patients’ organisations’ inputs to the changes needed to ‘push the trust button’. Her plea was to build data ethics together. As she announced, Data is individually valuable and collectively powerful.”

Third speaker, Barış Erdoğan, from session sponsor, Clinerion, Switzerland, a provider of real world data solutions, bridged the gap in the ecosystem between life science, academe, and citizens. He outlined very much how AI can help. He presented the potential benefits of AI in providing more, and more accurate, data and its use as a supporting technology. He explained the role of the anonymisation and pseudonymisation of data. He drew the audience’s attention to a further variety of topics, including the use of AI and data to provide actionable insights, solutions, and support in the health and care fields.

This session was moderated by Rachelle Kaye, Assuta Medical Centers of Israel. It was based on the work done by the TEHDAS joint action on understanding citizens’ attitudes to health data-sharing and use of their health data and on the practical experiences of businesses. It took place with the support of Clinerion, Switzerland.

🗣️ Discussion: Sara Mas, Salus Coop, Spain enthused about the way in which, with a citizens’ led cooperative, a person can share their (health) data any time. It remains a challenge, nevertheless, to promote data literacy.

✅ ePoll: An ePoll on sharing or not sharing data reached a sample size of 21 Symposium respondents. It showed that people are in principle willing to share (health) data. Thirty-eight per cent (38%) of those who responded indicated that people support such data-sharing as a means to lead to better public health, prevention and policymaking. Very close to half the respondents (48%) stated that citizens would not, however, want to share their data if they believed it was being used for someone else’s (financial) ends (e.g. to make a profit). Hence, people’s willingness to share data is based on their recognition of the greater good it can offer to society not just for the benefit of one’s own health or that of one’s own family.




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