“It’s going to get a lot more personal,” highlighted Saara Malkamaäki of SITRA (Finland), the Finnish organisation which sponsored this session. People themselves will be much more intensively involved in managing, adding to, and sharing their own data.
Much of what will be achieved will take place through people working together to shift the general notion of a data economy to a fair data economy, with its focus on the ethical creation of data-based products and services.
SITRA colleague, Markus Kalliola, summed up the basic six principles that underpin a fair data economy. SITRA has calculated what is the potential competitive advantage feasible through the use of these principles and what impact they will have by 2030.
Practical examples of functioning good practices in the field of health data came from Mariana Meiro of SPMS (Portugal) and Thomas Grandell of Etsimo Oy (Finland).
Mariano Votta of the Active Citizenship Network (Italy), a participant in the session’s panel, wanted to know who, more precisely, in the future will be in charge of enhancing people’s health (data) literacy. In terms of who could/should get involved in citizens’ generated data sharing, in the words of Dipak Kalra of I˜HD (Belgium), “If nobody is going to be a clear winner, perhaps we could all cooperate on co-creating the rules of data engagement.”
✅ ePolls: This session was full of ePolls. In the first poll, audience members did not think that today’s sharing of data is yet ‘in balance’ among all the stakeholders involved: overall, they perceived a predominant imbalance in favour of companies. Second, attendees were clear that there is a competitive advantage to complying with the principles of a fair data economy. Third, on what would help citizens the most in terms of data, attendees thought the benefits of person-centric health data sharing need to be communicated and data literacy needs to be enhanced.
🗣️ Discussions: In this session, discussions among the Symposium attendees ranged over two levels: one involved citizens, the other organisations. In terms of citizens, they covered citizens’ trust of data sharing (and often lack of it), in particular, in terms of the use of mobile apps; people’s or patients’ empowerment; and the appropriate types of education needed to encourage people/patients to feel confident about sharing data. Organisationally, there was considerable interest in privacy as a ‘network property’ rather than as an individual attribute; the ways in which data cooperatives work; how data cooperatives are or should be financed; and what kinds of analogies are appropriate when making comparisons between the healthcare sector and other administrative or industrial sectors e.g., the financing or banking sectors.