A BEUC survey, carried out by Euroconsumers, finds over 2/3 of consumers want the value of their health data reflected in healthcare and medicine prices. The European Health Data Space should put the value consumers get from health data on a par with companies and national health budgets

Legislation to create a European Health Data Space announced in 2022 as part of the European data strategy could radically change how health data is shared in the EU.

The proposal wants to make health care easier by sharing vital information with patients, different health services and professionals at home and abroad. It also wants to open up access to digital health data for research, innovation and policy making.

What do consumers think of health data sharing?

With all the excitement about advances in diagnostics, treatments and medicines that would be accelerated by smoother data sharing, is enough attention given to the view of citizens? People know how sensitive and valuable their health data is, and are likely to have strong views on the conditions and circumstances under which it can be shared.

To put this right, consumer organizations from across the EU took part in a joint survey of their citizens to find out what type of data they are willing to share, with whom, and for what purpose.

The survey of eight countries included all four Euroconsumers’ members, Belgium, Italy, Spain and Portugal as well as the Czech Republic, France, Germany and Greece. In total over 8,000 people were surveyed with results weighted to reflect national populations. The results presented here amalgamate the responses from all eight countries.

Euroconsumers’ manifesto ‘My data is mine’ signed by all of our members lays down a vision for a consumer-centered data economy, which wants to put consumers back in control of the data they themselves generate. So we were really interested in finding out more about consumers’ attitudes with regards to their health data. Here’s some of the headlines:

Consumers want to get fair shares of value from their health data sharing

From previous research carried out by BEUC (working with Euroconsumers on focus groups with Spanish and Italian consumers) we knew that once consumers were more aware of the complex mix of private and public funding for drug R&D and their tax contribution, they wanted a much greater return on investment.

This is reinforced by the emphatic finding in this new survey that most respondents believe that the profit created by companies through the use of citizens’ health data should be reflected in more affordable and accessible healthcare services and medicines (68%).

At the moment consumers make a ‘double payment’ for health innovation. When the cost of products based on insights and innovations from consumers’ own health data are high, then a consumer effectively pays twice  – initially with their data, and then a second time through their wallet or through their taxes which fund public health care.

Consumers see benefits in sharing health data – if it’s the right data shared with the right place

The main benefits consumers perceive about the digital sharing of health data is that it helps with developing new or better diagnostic systems (39% of all respondents), can make it easier to access treatment across the EU (32%), and enables better medical follow up (30%). There were concerns around data theft which were among the highest in Spain (44%).

As one of the key aims of the EHDS is to make it easier for a health professional to access patient’s records if they needed treatment in another member state, we were also interested in how consumers’ felt about this.

Actually, less than half of people (43%) said they were willing to give access for this purpose, and the rest of the responses either didn’t want to give access to their data in other EU countries (27%), weren’t sure or had no opinion.

This suggests there is ample room to improve consumers’ awareness of the health benefits of health data sharing for care purposes through awareness-raising campaigns.

People also worried about unauthorized access (40%), unauthorized use of them (39%), or insurance companies getting their hands on the data which could lead to a refusal to insure or to an increase in insurance premiums (27%). The question of who can access what data for what purpose is central to consumers’ feelings.

Insurance companies, digital, wellness apps and big pharma companies are not trusted with consumers’ data

People tend to be much happier sharing their health data with a general practitioner (88%) directly delivering health care to them than with other parts of the vast health and pharmaceutical landscape.

People are much less happy sharing health data with digital technology companies, wellness/health apps, and insurance companies, with under 10% of people willing to do so for either scientific research or public health reasons.

The pharmaceutical industry does not come off much better – only 17% are willing to share their data with them for research. This is problematic, as accessing more detailed health data could boost innovation in treatment development. For now, the trust is not there.

Consumers want to be in control of their health data

As the results above show, people have different attitudes depending on who they share their data with.  When it comes to sharing with health professionals and services for research, care and public health reasons, about half of respondents think that they should be able to give explicit consent that their data can be accessed (51-57%, depending on the purpose).

However, the share of people who don’t mind their health data being accessible by default to health professionals is also reasonably high – from 34 to 45% depending on purpose.

Again, attitudes change when it comes to very sensitive data (for example genetic data) where  a majority of respondents (69%) think that it should not be used for research purposes without the patients’ explicit consent.

But these attitudes don’t always carry across to behaviors. Only 19% of users of online health portals and platforms have changed their privacy settings to limit access by health professions, although one in ten did say they would have adjusted their privacy but didn’t know how to or found it impossible to do so.  

Give consumers a stake in the EU Health Data Space

A huge proportion of public health spending goes to medicines, the EU Health Data Space could see a huge amount of consumers’ data added to that, and will increase the opportunity for big pharma companies to make huge profits.

Consumers want safety, security and to make explicit choices about who gets to see what type of data, for what purpose.  They also want a stake in the value their data generates.

It’s critical therefore that consumers, as data creators, are able to easily get value from that, not just through new treatments but through a reduction in the prices they pay either directly or through taxation.

As EU institutions develop the EU Health Data Space proposals, they must listen to consumers’ on this key point. Consumers have made it clear that the data they collectively create should be exploited for their benefit. For this reason, the use of data from the EU Health Data Space should be tied to a return on public investment.

Making this change will be a bold step and show that Europe is willing to lead on building a data economy that doesn’t just talk about consumer value but truly delivers it.

Note on methodology: The sample was reached through an online questionnaire sent out to a representative sample covering Belgium, Czech Republic, France, Germany, Greece, Italy, Spain and Portugal, based on the latest national statistics of each country. The socio-demographic variables taken into account were: gender, age (18-74 years) and regional distribution. After receiving the results, the data were weighted for gender, age, region and educational attainment. The data collection took place from 21st to 27th February 2023. The total number of valid answers used for analysis is 8,067.