Reading the Berlin Declaration on ‘Digital Society and Value-Based Digital Government’ has been a breath of hope!

A lot of what I could advocate for a citizen-centred perspective on data sharing was (finally) agreed upon by the Member States under the German Presidency of the European Union. If the European Strategy for Data left a void on so many of these aspects, they are now fully recognised and we can only hope that, more than just a wish list, a set of actionable measures will be put into place to ensure these extremely important priorities are upheld: social participation and digital inclusion, empowerment and digital literacy, trust, and human-centred systems.

It is an even happier day when these new principles come fully in line with the main conclusions of the Consultation Paper on Citizen-controlled data sharing governance that I proudly led within the work of the ECHAlliance in the DigitalHealthEurope (DHE) project, in collaboration with SPMS, i~HD, empirica, AGE and EHTEL.

For the last two years we have been reviewing the existing literature, interviewing experts, engaging citizens and performing events to broaden the consultation base of our work, with the purpose of advancing and enabling citizen-controlled data sharing governance models and tools that empower citizens, foster better research and ultimately promote societal good.

From this work, we could conclude that technology is not considered as the main barrier to data sharing. As one of the experts in our last event concluded, technology will always find its way if a culture of trust is settled first. Indeed, TRUST is seen as the cornerstone of this equation – it is, however, a complex concept and it needs to be fully explored and discussed if we wish to find the right actions to enhance it.

Personality aspects and convictions, cultural aspects and differences, age and even the socio-economic context seem to be strong influencers of personal trust on organisations and therefore directly enable or hinder data sharing probabilities. Additional core concepts, such as transparency, information, and awareness, as well as their correlation with governance and technology, are underlying factors of trust and also need close attention.

From the survey undertaken under the DigitalHealthEurope project, where 936 citizens were consulted, with participants from all EU countries, United Kingdom, the United States and Switzerland, it seems that there is a high awareness of the value of data for the common good, with 80% of the participants fully aware that their data may be of interest for research on diseases, medicines, and other issues related to health.

It was also clear that a considerable percentage of citizens reveal a significant lack of information on data sharing in the health and care sector. A total of 57% of the respondents did not know who has access and control of their health information. No gender distinctions were relevant; however, results by age show that older adults (53%) are better informed about data sharing than younger ones (41%) and more eager to understand the topic if they are not aware yet of it.

Older adults seem to be much more favourable to share their data as a principle (67% vs. 37%), while younger citizens appear to prefer to analyse the situations case-by case (46% vs. 30%). Given this, distinct strategies on data sharing governance models for different age groups may be one relevant angle to consider for the future.

However, for this to be consequent and effective, more education is needed for citizens and this requires a) one precondition and b) a trio of literacies:

The essential pre-condition is digital access and it is very positive that this aspect is duly enhanced in the Berlin Declaration as a key principle: “All people of Europe should be able to participate in and benefit fully from digital opportunities on an un-conditional basis and without discrimination. We recognize the need for equal access to an open Internet for all parts of society, including disadvantaged groups and citizens with disabilities, as a cornerstone of diversity of opinion, pluralism, innovation and progress.” The fact is that this was already an issue before, but the COVID-19 pandemic is increasing poverty rates and will further grow the wealth gap, which raises obvious worries on the potential exclusion of those more in need of digital services. It is therefore, a key aspect to consider for further action.

When digital access is guaranteed, the next step is working on the trio of literacies: digital, health and data literacy. A concerted approach on these three aspects is extremely important, as they need to work together if we want to genuinely enhance citizen participation and ownership of the digital revolution, essential for further developments in the data sharing landscape. This should then be the second priority for action.

Last but not least, we cannot expect citizen empowerment if citizens are not co-creating the solutions to their own societal challenges. Patients have been extremely well represented for many years, namely by patient organisations that have been doing a tremendous work in ensuring their rights are defended and needs are considered in policy decision-making. However, citizens that do not have any chronic conditions or are not going through a disease period have not been sufficiently involved in the discussions regarding health data sharing.

This needs to become a common topic, understood and broadly discussed if we ever want to have citizens empowered and in control of their data. Multi-stakeholder initiatives, such as the Digital Health Society, Data Saves Lives and All policies for a healthy Europe, are of extreme importance to democratise this discussion and engage different perspectives in the conversation. We need to lose the jargon, make it clear and simple to explain and have very transparent rules. This will allow for more people to feel connected and participate.

Today, I feel we are one step closer: trust, awareness, access and literacy will pave the way further.

Carina Dantas, Senior International Project Manager for the ECHAlliance, CEO of SHINE 2Europe, and reviewer for the European Commission, Eureka, AAL and EIT Digital.