'Give citizens and patients control over their data'
This text is based on the joint opinion statement (Dutch only) published on VRT news on 19 May 2020.
The COVID-19 crisis provides daily proof of the importance of data. The approach we are adopting and every possible route out of the pandemic are based on data. We see daily summaries of the number of new infections, hospital admissions, deaths from coronavirus etc. Behind the screens, call data are mapping our movements and whenever we go to a hospitality venue we have to leave personal details. Belgium now has its own warning app, Coronalert, which has to be combined with human contact tracers at all times to guarantee full coverage. Sources, contacts and clusters of infected people have to be exposed. Nevertheless, people are feeling suspicious and uncomfortable. That brings us to a much wider and more fundamental problem relating to the use of personal data: in our current system, it seems to be difficult to reconcile innovation with ethics. In many cases the two even seem diametrically opposed.
The tip of the iceberg
COVID-19 is only showing us the tip of the data iceberg. Data about citizens, consumers and patients is collected by the government in order to make policies, by companies to develop new products and for marketing and sales, or by hospitals, universities and knowledge institutions for research and innovation. Smart use of data is leading to new insights, valuable innovative processes and even better medicines and health care. Big data will allow us to have a better understanding of who is at risk from specific diseases and who benefits from particular treatments. This can only happen if the data does not continue to be gathered and stored in separate silos. Bringing together data from a wide variety of sources creates inconceivable opportunities for research and development, but it will also require the data to be handled with extreme care. The problem is that whoever collects the data also manages and controls it. They rarely share it with others, and there is little transparency about how it is used. Whoever collects the data becomes the de facto owner and controller of that data. This is true even if the opposite is required by law. The legislature claims to protect citizens, patients and consumers. It even gives them rights over the use of their own data. Nevertheless, the people who are the data subjects rarely have any real control over their own data. That is because other parties have different interests. The business models of those who collect data are not served by relinquishing control of it. The current technological ecosystem is not suited to this. There are even suggestions that most citizens and patients are not ready for it.
What do people who share data think about this?
What do the people who either willingly or unwillingly provide their data think about the protection they receive and what other people do with that data? In practice the vast majority of citizens are willing to share their health information - even information about their DNA - for the purpose of scientific research. They are willing to do this as long as society is improved as a result. This was the result of a citizen forum organised by the King Baudouin Foundation (KBF) and Sciensano in 2018 on the use of genome information. Citizens do, however, want to maintain control over the use of that data. They want transparency, traceability and feedback. Citizens also want to know who is using their data, purposes for which it is used and the results. If individual citizens or patients have the impression that their trust is being abused, they want the right to withdraw their data. We, the VITO-VPP-DM-ZI-KBF partnership, call for citizens’ and patients’ confidence in data science to be improved by giving them ownership of their own data and actively involving them in decisions on the management of that data. This means guaranteeing that citizens can share their data safely, as a tool to promote both their own personal well-being and the public interest. That will require a number of changes. The ‘disclaimers’ and ‘informed consents’ currently seen in the area of data collection and data sharing are mainly intended to comply with legislation and avoid government sanctions. We must ensure that people are able to make truly informed choices about data sharing and to do this independently. They must be enabled to provide ‘true consent’. They must also be able to enrich their own data naturally.
Is it achievable?
That will, of course, require a substantial improvement in the digital skills of the average citizen, as well as better health literacy and a greater willingness to participate. Is this an impossible task? Of course not. After all, who would have dared to think, at the start of 2020, that our children would be e-learning and Mum and Dad would be working from home on digital platforms? If all that can be achieved in just a few days, what the EU calls ‘citizen-centric data management’ - is not simply a Utopian idea. This is certainly true in areas that really affect everyone, such as health care and well-being, preventive health care, personalised medicine etc. This approach will, however, require a new kind of collaboration, an innovative ecosystem with appropriate governance and with participation from all those involved, including patients and citizens. In this system they will no longer be providing data passively as objects merely undergoing data collection, but they will be recognised, active partners. They will contribute towards research and innovation and their partnership will be valued.
Mutual trust is the key element in such a partnership. Real consent creates the basis for sharing of data. The opportunity to receive feedback is inherent in the system, as are flexible changes to consents that have previously been given. In short, if you want a future in Flanders, Belgium and Europe that includes data science and data-driven innovation, with respect for privacy, you must give citizens control of their own data.
Jef Hooyberghs, Head of Research, VITO (Flemish research centre)
Ilse Weeghmans, Director, Flemish Patients’ Platform
Roel Van Giel, Chairman, Domus Medica
Margot Cloet, Managing Director Zorgnet-Icuro
Gerrit Rauws, Director, King Baudouin Foundation