Citizen controlled data sharing governance Combined report from the session at Digital Health Society Summit

Discussions on data sharing have multiple perspectives, interests and even biases and the only way forward is to acknowledge the tensions but search for the potential compromises that can be implemented in the short-term. It is essential to progressively improve the testing of new models, the amount of data being shared and the awareness of citizens – ultimately their trust.

The aim of this session was to discuss (and possibly agree on) the main next steps to be followed, concerning legal questions, societal issues and business models for successful citizen-centered data sharing models, based on four axes: transparency, information, awareness and trust.

The panel discussion was moderated by Carina Dantas, Senior International Projects Manager at ECHAlliance and included the following experts.

• Birgit Morlion, mHealth Programme and Policy at European Commission, DG CNECT
• Jaana Sinipuro, Project Director at IHAN SITRA
• Sarah Medjek, Chair of MyData Global Board of Directors
• Nicola Bedlington, Special Advisor at European Patients’ Forum
• Jeroen Maas, Challenge Lead Health at Amsterdam Economic Board

To set the scene and create a ground for discussion, two presentations were shared:

• Birgit Morlion presented the general European framework for the digital transformation of health and care, and introduced the importance of data for the effective implementation of digital health. She reminded the audience about the fact that, well before the pandemic, the European Commission placed high on the agenda the promotion of the digital solutions that put people first, empowering patients and citizens. Indisputably, data creates a share of opportunities; however, the right balance between the great societal benefits data sharing holds and the needs for privacy and trust must be established. There is a need on transparency of how data is shared and for which purpose, to increase trust on the service providers, governments and insurers. Also, citizens and communities should be included in the agenda of this transition.
• Carina Dantas presented the work developed on Citizen-centred data sharing governance under the DigitalHealthEurope (DHE) project, that included a vast desk search, interviews to experts, a survey and a series of discussion and consultation events. She highlighted the results of the big survey conducted in spring with almost 1000 citizens’ answers. According to the results, 57% of the respondents don’t know who has access to and control over their data. However, 80% are fully aware of the fact that their health data might be of interest for research related to health. Moreover, if on one hand 76% share data with a university or medical research organisation and 72% with a health and care provider, there is a lot less willingness to share the data with private organisations (only 1% in general or 11% if it is a commercial organisation developing or delivering health and care). Regarding the feedback or reward for data sharing, most people would like to be notified about the results of the research based on the data shared.

At the end, Carina Dantas presented four preliminary conclusions derived from DHE work for discussion:

1. There is the need to increase citizens’ awareness and facilitate ways for people who want more control over their data and its uses. Feedback on sharing and uses of their data should be provided.
2. Governance models that allow citizens to access, control and share data are needed. Some are already being developed but should be scaled up.
3. We need more trust – trust is a big challenge, and digital education is necessary.
4. We must work to improve informed consent guidelines to make it readable, clear and easy.

Based on the introductions that set the scene, the panelists engaged in the discussion that circulated around several themes:

1. RAISING AWARENESS AND ENHANCING PUBLIC AND CITIZENS’ TRUST

a. Literacy

In order to increase trust on data sharing, there is the need to educate citizens, professionals and policy makers about the digital tools and the benefits they can bring, and this includes basic knowledge such as digital, health and data literacy, which was positively increased by the COVID19 pandemic, at least by bringing to daily news dashboards and data analysis. However, also education on the rules for responsible data sharing are essential and this can increase people self-confidence and empowerment, so much needed to execute their rights and be able to share their data in a safe, responsible and meaningful way.

b. The paradoxes

The data sharing paradox was also discussed. Today it is evident that many people share their data in an uncontrolled way, for example, on social media – the immediate benefit, either on personal image or of getting access to a service for free is triggering the mechanism of sharing, despite all possible risks, which are abstract. At the same time, people are resistant to sharing their health data with the authorities, as they often don’t understand what they do it for and what kind of benefit will come from it.

c. Targeted approaches

Only by seeing the value, people will be eager to share their data. This is often more clear to patients or people with multimorbidity or severe chronic diseases, as it was also suggested by the DHE survey presented, where older adults (>65) seem to be much more favourable to share their data as a principle (67% vs. 37%), while younger citizens (<25) appear to prefer to analyse the situations case-by case (46% vs. 30%).

This points to the need to differentiate approaches for different age groups, also different types of stakeholders (patients, citizens) and consider cultural differences, having as the background data as a public good, not only for personal or commercial but also for societal benefit (for research but also crisis management).

2. THE DIGITAL FUTURE DESIGNED THROUGH DIGITAL ETHICS

If the technological solutions and the needs on interoperability, data quality and quantity are all important, the design thinking of the solutions needs to go beyond technology and digital ethics should be introduced to the discussion about how the digital future should look like. Digital ethics includes empathy, responsibility, competence and trust in place – they all are interconnected and cannot exist without the others.

If data sharing is a necessity, we need to join forces and discuss design principles, to allow unlocking health data sharing, guaranteeing all the necessary precautions.

3. MULTI-STAKEHOLDER COLLABORATION (also between initiatives) NEEDS TO BE STRENGTHENED

There are currently several fragmented initiatives working for the same goal: making sure people understand the value of data sharing and feel confident doing it in a safe and responsible way. However, more collaboration between those projects is urged, as well as between the different sectors. Everybody needs to be part of the conversation – from citizens and patients to the healthcare providers, to governments and policy makers, as well as businesses, who ultimately develop relevant services that can bring value from the data back to the people.

Several of the first introductory notes highlighted the value of initiatives that gather multiple perspectives (Data Saves Lives, MyData, Dutch Health Space), in accordance with the results of the poll answered in a previous session of the Summit, that showed a clear choice (82%) by a multi-stakeholder group (in alternative for single types of organisations) as the one to define the benefits and value of data use and reuse as a societal good.

Three main ideas for the future discussion and work emerged:

1. Collaborate with multiple stakeholders in the work and design of the European Health Data Space, building it together and in full cooperation.
2. Bring representatives of citizens to the discussion, which can voice the perspectives of the general population from the different parts of Europe, taking the example of patients that are already very well represented.
3. Highlight the need of design principles and digital ethics to develop the conditions for responsible and meaningful data sharing.

The discussion carried out at the Digital Health Society Summit is integrated in a series of events developed under the DigitalHealthEurope project and will continue at the MyData Online 2020 Conference in December, at the session “Evolving trust in data sharing” (10 December, 15:45-17:15 CET).

Learn more about the Digital Health Society Summit 2020 here

Watch the recording video below