It is certainly clear that different people benefit from different health advice and the associated treatments. It is also becoming increasingly clear that this area is the focus of commercial interest. More and more new products and services are zooming in on personal health advice. Both in the area of ‘personalized medicine and digital health’ and in terms of ‘lifestyle as a medicine’.
The NRC newspaper recently published an article about lifestyle as a medicine that was widely shared on social media, reflecting the enormous public interest in this topic. What is still unclear is exactly how personal health data is being handled in this connection. In the world of personal health advice, I’m still not entirely clear about who actually owns my data.
“In the world of personal health advice, I’m still not entirely clear about who actually owns my data”
Researchers, companies and policymakers are all discussing and developing personal nutrition, medication and exercise programmes. Based on our personal health data, these are for you, for me and for all of us. Each piece of advice and every course of treatment is based on who I am and what my advisors (my doctor, my supplier) know about me.
Health data is enormously valuable
Clearly, personal health requires data from measurements, both those I make myself (e.g. smartphone apps) and those made by others. For instance, both the heel prick test and participation in screening programmes involve the storage of data and human tissue samples.
Such health data is enormously valuable. It’s valuable to me personally, as it helps me get healthy and stay healthy. It’s valuable to companies, because big-data analysis opens up a wealth of commercial opportunities. It’s valuable to researchers, as it helps them to develop new treatment options. It’s valuable to insurers, as the analysis of my data can predict future changes in my health. It’s also valuable to the judicial authorities, as biometry is being increasingly used to catch criminals.
Access to tissue samples
The big question is ‘who actually owns my health data?’. Medical professionals discuss restrictions on how they may handle my data. Companies store all kinds of data about me in health apps and other digital applications. In principle, however, this data is mine, even though I have very little access to my data in practice.
“If necessary, the judicial authorities are permitted to explore and examine all DNA material that has ever been stored in hospitals or for research purposes”
Edith Schippers, the Minister of Health, Welfare and Sport, recently produced a draft legislative proposal aimed at improving the regulation of access to tissue samples. Amazingly enough, this includes an important exception. If necessary, the judicial authorities are permitted to examine all DNA material that has ever been stored in hospitals or for research purposes. This is an inadmissible breach of doctor-patient confidentiality and of scientist-participant confidentiality. It goes to show just how slippery the sliding scale really is.
Every citizen is the owner and administrator of his or her own data
As I see it, things are quite clear. I am the only real owner of my health and of my health data. I must, therefore, have optimal access. No, I must actually be the owner of this data. And everyone else must ask my permission if they want to use it. Any value derived from the use of my data should also be relevant to me.
TNO is helping to establish a new foundation, which wants to set up a system that allows me to own my own data: a health data co-operative. In this structure, every citizen is the owner and administrator of his or her own data. Researchers and companies may request access to this data.
“Who owns me and who owns my data? I do!”