Publications
The EHDS and the "legal basis" problem of scientists
A political agreement has been reached in Brussels regarding the European Health Data Space Regulation (hereinafter: the EHDS). This European law will (also) bring about changes regarding the reuse of health data for healthcare evaluation and improvement, scientific research, statistics, policy, and innovation. In the Netherlands, there are voices saying that the EHDS solves the legality problem: the problem that data holders want to make health data available to researchers, but believe the GDPR prohibits this and therefore refuse.
The EHDS, science, law, ethics, interests and perception
The GDPR repeatedly mentions science as something that deserves space, and our strict Dutch Data Protection Authority (AP) agrees. Just look at the work of the Netherlands Institute for the Study of Crime and Law Enforcement, where legal sociologists, with the knowledge of the AP, also process special categories of personal data, including non-pseudonymizable images, without consent, yet with extremely high levels of security. Therefore, the principle of purpose limitation does not apply to science and statistics, regardless of whether this is practiced within or outside the data controller.
A false dilemma: privacy versus data solidarity
Monetizing data is becoming increasingly difficult; the EHDS also stipulates that when requesting data, only marginal costs may be charged. After all, healthcare data is a public good that should benefit the community. Therefore, like bicycle paths, data flows should be funded from the public purse. The discomfort and unease surrounding the debate about data sharing in healthcare, while the relevant legislation is actually quite sound, indicates that we need to jointly examine the soundness of our assessment frameworks.
Finally, data sharing is not a privilege but a right
This new data right, too, will only truly take effect when involved parties invoke it and test the exact scope of their rights. And that is precisely what healthcare administrators can and should do.
Reluctance and non-commitment must give way to assertiveness and interaction. Scientists can legally demand datasets, effectively dispelling the idea that receiving data is a favor.
Artificial Intelligence & Horse Manure
There are real reasons for concern, they say, because AI is essentially superintelligence, but without empathy! But that seems fantastic to me: a super-brain without egotism, narcissism, jealousy, greed, or aggression. Fantastic, right? Yes, but doctors fear AI might replace us in the job market. But that also seems nonsense to me: first came the machines, then the robots, and both would make us humans redundant. But we still have a glaring shortage in the job market.
Arrange direct access to medical data for research into excess mortality
First of all, the adage “more is better” often applies to research. If larger numbers of researchers have access to more data, diverse questions about individual or collective public health can be tested. A national register listing those who object to the use of their pseudonymized data could significantly support science and improve healthcare. This would also enable research using AI. A computer could then alert us, for example, to side effects of combinations of different medications, something that is currently insufficiently researched.