Surveys & Studies

My health data is mine: give consumers a stake in the EU Health Data Space

For consumers to know that ‘My health data is mine’ they need control over their health data and share in the value it creates. Proposals to create a new EU Health Data Space must put power and choice in their hands.

Health data is one of the most valuable categories of data out there and many stakeholders are keen to get their hands on it. The EU has put forward proposals for a Health Data Space that will facilitate digital health data sharing as part of the wider 2020 European data strategy.

In this blog, Euroconsumers considers these developments through the lens of our landmark manifesto on data empowerment called ‘My data is mine’.  This manifesto, signed by all of our members five years ago sets out how to build a data economy with consumers in control and at the heart of innovation and value.

How does the European Health Data Space proposal for unlocking the power of health data stand up against the consumer-centred vision for data as declared in Euroconsumers’ My Data is Mine?

How will the European Health Data Space unlock the power of health data?

The proposed new regulation for a European Health Data Space has two core aims. Firstly, making it easier for individuals to get better treatment by sharing vital health information with health services and professionals at home and across borders. Secondly, it wants to make electronic health data accessible for research, innovation, policy-making and regulatory activities.

Put consumers in control of health data choices

The first aim of giving individuals better digital access to their personal health data both at home and if they need treatment or medicines when travelling in the EU will be helpful. However, consumers should be in charge of how this data is shared and with whom.

Health data should not be open to be shared and accessed by default. Instead consumers must retain control over their health data by having the right to choose to opt-in to this type of sharing, and be fully informed and aware of the positive and negative impact of doing so.

But any advances into health data sharing and analysis must be treated with extreme caution. Its very value lies in the fact that it is sensitive and can reveal a great deal about a person, or groups of people. It has always been subject to higher standards of data protection and therefore any use under this new regulation must stick to these stringent, high standards for privacy, transparency and control.

Together with BEUC, Euroconsumers and its member organisations are among other things, asking for tighter regulations on access to data by health professionals, ensuring any form of exclusion or discrimination on the basis of data sharing choices is prohibited and guaranteeing a high level of security and confidentiality.

Innovation potential of health data

It’s no surprise that the EU wants to get moving on their second aim – to free up access to health data by external bodies like researchers, businesses and policy makers.  There is an almost endless list of ways in which health data can be used both for the common good, and at an individual level to personalise and tailor treatment.

For many years, ambitions for health data have been high and the rise of artificial intelligence techniques to learn patterns and insight from vast sets of data has increased this.

Tracking the impact of medicines, vaccines or treatments at a population level could help improve health outcomes for millions of people. Merging health data with demographic and social information could unlock new understanding of how lifestyles and location impact on public health.

Consumers should get value in return for sharing health data

Under this innovation element of the proposal, Euroconsumers wants to see a much more revolutionary approach to how the value of consumer-generated data is defined. Control over health data use is a crucial element, but it is not the same as having control of and a stake in the valuable products and services that their health data creates.

Rethinking how value is shared gives us a completely new perspective that health and data policy makers are missing. My Data is Mine declares that when consumers share data, they should be able to get a tangible value in return. 

This value should go well beyond the familiar exchange that consumers have been pulled into. In the dominant business model, free search, email or social networking services rely on amassing huge amounts of highly personal data from consumers and selling it on.

Instead, the value that consumers get back should better reflect the economic value. This value currently stays with the companies making use of the data – data that is generated by consumers themselves.

Applying this to the European Health Data Space plans would mean that data-led innovations in medicines or treatments should reflect the contribution of consumers’ health data in market prices. After all, this data is created and generated by consumers when they visit a doctor, have treatment, use nutrition or sports apps or take blood tests.

Making provisions for lower prices for medicines and treatments that have been developed with consumers’ health data meets the aim of improving availability of affordable medicine which has since long been under pressure with surging prices.

And it would correct the situation of ‘double payment’.  If products based on insights and innovations from consumers’ own health data are high, then a consumer effectively ends up paying twice – once with their data, and a second time through their wallet or through their taxes which fund public health care.

Make the Health Data Space an empowering place

We want all consumers to be able to say ‘my health data is mine’. For this to happen, the EU Health Data Space proposals must strengthen basic health data protections to the highest level, and for maximum control, it should ensure that consumers are able to proactively opt-in to their data being used.

This is a huge chance for Europe to lead the way in demonstrating what a consumer-centric data economy could look like.

We should be much more ambitious about what the innovation element of the Health Data Space could achieve. There is a great opportunity to put real life consumer challenges such as expensive medicines and treatment at the centre of data-based problem solving. This can show the whole world what tangible, consumer focused innovation looks like.