From our latest medical prescriptions to our exercise habits, everything related to our health says something about us. Health data is a valuable source of information for us personally, but also for the doctors treating us, the researchers looking into new treatments, and governments investigating public health problems. Health data is also extremely sensitive and of enormous value to entities such as pharma companies who want to sell us products or services.
To make better use of this data, the EU is finalising discussions to to set up a European Health Data Space that can operate across Member States.
To get consumers to buy into the system though, we believe it’s crucial to give them a say in how their data is used.
What is the European Health Data Space?
There are several goals behind the system.
First, it will allow people to consult their own health data electronically, to be able to see what data has been introduced by doctors.
Second, it will also make the data accessible to healthcare professionals in their country, but also from other countries. This could come in really handy when you go abroad and run out of your prescription-only medicine, as pharmacists would be able to deliver the medicine prescribed back home, or if you fall sick or have an accident and the doctor treating you can access your whole file which can help make a more correct diagnosis. In this case, healthcare professionals treating us will be able to access our health records, unless we explicitly choose to restrict access to them.
Third, the European Health Data Space proposal foresees access to our anonymised or pseudonymised data to entities across the EU on different grounds. During the COVID-19 pandemic, health data was used to monitor the spread of the virus and the emergence of new variants across the EU, while also facilitating research behind COVID-19 vaccines.
While public health scientific research, policy-making and regulatory activities are rightly among the reasons that this type of data can be made accessible (scientists can use it to develop new treatments while governments can base their decision-making process on better and more solid evidence), the Commission proposal worryingly includes “innovation activities” as a legitimate reason to be granted access to our health data. Alarm bells.
What are the mysterious innovation activities which could fit here? Can Big Tech or insurance companies access all kinds of our health data? Is that in our interest, or theirs?
There seems to be a misconception that all innovation is good innovation, which must be pursued at any cost. However, innovation is not an end in itself and must come with a purpose that delivers for consumers’ and societal needs at large. Innovation does not always mean societal progress. Many ‘innovative’ products or services have proven to be dangerous or useless or for consumers, such as ‘get-better-in-an-instant’ cold-relief medication which have more than questionable efficacy.
Our health data should not be abused to generate commercial profit but instead be used to create a public return for society, and deliver safe, effective and affordable treatments
Consumer choice is key
The question arises then – can consumers decide whether or not to share their health data? According to a recent BEUC survey, consumers are very cautious about sharing their health data and understand how valuable and sensitive it is. This is why most survey respondents were against the sharing of their data when the entity in question was not involved in direct healthcare. They also want to decide what data they give access to, and for what purposes.
However, EU member state governments, which are currently working out their position on how this data should be made available and to whom, seem to prefer that each government can decide whether or not to grant the consumer a right to opt out of sharing certain types of data.
This is a big mistake.
Some countries have already indicated they do not want to create opt-out rights, meaning consumers could end up losing control over what happens to their health data.
In practice, this could mean entities such as pharma and tech companies could gain worrying levels of access to our health data without us being able to say no. It is true the data will be pseudonymised, but it is still possible to attribute it to the person it relates to.
That would undermine trust in the system being set up, and it would increase people’s sense of losing control of what happens to their data.
It’s high time consumer choice is respected
Before reaching their positions, both the Parliament and member states should ensure consumers are in the driving seat and are able to choose when they share their sensitive health data. To ensure society’s trust in the European Health Data Space and to make it a success, consumers across the EU should at the very least be allowed to opt-out from sharing their health data for purposes other than healthcare.