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Session 2 - Enabling citizens to be in better control of their data

While much of the current focus is on expanding the use of digital technologies – as EHTEL’s 2021 Symposium title suggests, it will also increasingly include data. Two important ways of helping people to take better control of their data sharing were explored in this session. They were organisations such as data cooperatives and methods/techniques like dynamic consent, which can enable people to modify with ease their levels of data sharing. Introduced by Matteo Melideo of Engineering (Italy), this session was supported by the InteropEHRate and OPENDEI projects.

We are all billionaires in health data,” proposed Ernst Hafen of the Institute of Molecular Systems Biology (Switzerland) enthusiastically. He outlined the drive towards data-driven precision medicine. He then introduced the work of MIDATA, a citizen-owned data cooperative and data intermediary based in the Swiss city of Zurich. He later underlined that, today, he does not believe it is feasible to wait for countries’ health and care services to take action on better data control for citizens. Data intermediaries and citizens themselves are now ready to act.


There are several ways available to respond to the many challenges posed by the operation of dynamic consent. Sharmini Alagaratnam of DNV (Norway) proposed an approach that builds trust. An adapted framework can offer support in two ways: it can identify and mitigate both known and hidden risks, and it can prioritise and capitalise on opportunities. The company – which has a Healthcare programme, Group Research and Development – has published a White Paper which explores dynamic consent in depth.

Panellist, David Snelson of useMYdata (England) reinforced the patients’ view, especially on differences in attitude towards the use of data by non-commercial and commercial entities. Emre Bayamlioglu of KU Leuven (Belgium) drew attention to the ethics of citizens’ data control and the ongoing need for a solid definition/description of data cooperatives. Maria Christofidou of I˜HD (Belgium) indicated that, while data altruism and data intermediaries hold a great deal of promise, there are still many legal and regulatory approaches that have, although already proposed, yet to be concretely put in place and applied.

✅ ePolls: This EHTEL ePoll offered a richness of ideas about what would convince people to share their own personal data for multiple purposes. Respondents’ mentioned aspects like trust and transparency in the systems/services as well as the anonymity, encryption, and security of the data. In practical terms, there were references to the specificity and purpose(s) of the data use especially if the use is non-commercial; linkages to electronic health records and electronic medical records; receipt of feedback on results and use for science or use for biomarker discovery; and practical reductions in the numbers of hospital visits.

🗣️ Discussions: Discussion in the Symposium’s chatbox was vigorous. A number of Symposium attendees showed keen interest in the organisational and management arrangements behind data control and collection. Flatiron Health, and its 2018 acquisition by the world’s largest biotech company, Roche, was cited as an example of a smaller company/entrepreneurial enterprise (i.e., a data intermediary) that had aimed at helping people and patients be in greater control of their data. It had taken it time, however, to expand to a wider level of wider application. Even in the absence of public investment, it is already – through new initiatives and technologies – to make citizen-centred data sharing possible for multiple purposes. Overall, the view was that “we are on a good way”.

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