The EHDS, PFAS and marriage couseling
Three questions that merged
This morning, three things happened to land on my plate together: a new assignment on the useful reuse of health data, an article about the bizarre increase in symptoms of depression among women in their fifties, and a theory from a doctor friend about PFAS: it disrupts hormones, potentially causing our daughters to be shorter. In my mind, this merged into one big research question. If PFAS has such an impact on hormones, does that perhaps also explain why menopause seems so intense these days? And if we speculate a step further: do women divorce during menopause—by chance—or do they divorce due to symptoms triggered by hormonal factors (or environmental pollution)?
Combining PFAS and mental healthcare data
The answer is: nobody knows. Why not? Because at this moment it is virtually impossible to link mental health care data to other datasets on a large scale. Due to the stigma – and enormous legal apprehension – they remain under lock and key. And this is therefore typically a matter for the European Health Data Space Regulation. The fact that the EHDS has now been in force for a year makes me hopeful as a lawyer. Soon, as a scientist, you will be able to apply to the national Health Data Access Body (HDAB) for a permit to investigate these kinds of pressing questions. You will then gain access to pseudonymized data in a highly secure environment (a Secure Processing Environment). This way, for example, you can finally safely combine health data on menopausal symptoms with geographical data on the spread of PFAS.
EHDS will thus bring a lot to society.
Of course, the strictest security safeguards apply (rightly so), especially to mental healthcare data. But we are definitely moving from ‘data sharing is a favor’ to ‘data for research is a right’ due to the enormous societal importance. For if it turns out that environmental damage leads to an increase in divorces or burnouts via our hormones, then society needs something other than marriage counseling.
The EHDS prescribes a comprehensive and uniform assessment by the HDAB. A separate ethical assessment adds nothing and hinders science.
How does the EU define 'scientific research' in the Digital Omnibus? There has been criticism of this, but it is unjustified.
Many people are afraid that their jobs are at risk due to AI. I decided to turn the question around and asked Gemini: which jobs are you going to take over, in a way that make us happy? Here is her own optimistic answer.