Discussion with Anastassia Negrouk:
What about the re-use of Health Data?
September 13, 2021
The processing of health data raises many questions about its use and its second life.
Anastassia, the COO of MyData-TRUST approaches this subject in a pragmatic way and tells us a little more about it.
Who is Anastassia Negrouk?
Anastassia Negrouk is a biologist by background; she started her career in a research lab. A few years later she moved to a non-governmental, Non-profit organization running clinical research in oncology where she spent 20 years. Most of her tenure focused on the regulatory, partnership and patient involvement. Data Protection was also part of her regulatory responsibilities before the approval of the GDPR in 2016, it was thus natural for Anastassia to take on the implementation of the Regulation for the organization and to also become the Data Protection Officer (DPO).
In her role, Anastassia had the opportunity to intervene with legislators when the GDPR was only a draft. She also had the opportunity to do some lobbying and to propose amendments that were actually implemented by the legislator. This work showed her how poorly the research is understood by the legislator and also by the general public.
“Anastassia, what makes you get up in the morning?”
“The challenge makes me get up in the morning. How come I got so interested in the GDPR with a biological background? I think that I am a Researcher in my soul, I also like the legislation. My challenge comes from the fact that legislations have a good reason to be, for the GDPR, to protect human rights (in which I strongly believe). At the same time, the GDPR should not prevent research work.
It is my challenge every morning, to find a way to research to happen while respecting GDPR and the human rights. The complexity is such that it’s extremely intellectually stimulating to understand the context, the problematic and try to find a feasible solution for each client (big or small). So, there is no real routine, as each solution is e is different. I find this job very creative.
The other thing that helps me get up in the morning is the exceptionally dynamic, enthusiastic and young spirited MyData-Trust team. This was one of the reasons why I left my previous employer and I decided to join MyData-Trust. It is very pleasant to work with everyone as Chief Operating Officer.”
In today’s healthcare system, it is crucial to strike the correct balance between protection of personal information and enablement of data reuse for research purposes. Although this is no easy task, it is important that regulation be confronted with the practical issues that it raises and that it not be based on purely normative claims. In this sense, setting higher regulatory standards for health and/or genetic data cannot come at the price of the law being too articulated and potentially disorientating for both research institutions and data subjects.
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If you are an organisation operating in the Health sector looking for advice or additional information on this subject, contact MyData-TRUST. We will be pleased to assist you.