Our work on the Dutch Code of Conduct for Data Protection in Health Research is nearly completed. It was a long and intensive process. More about that some other time. As process supervisors, we had to put our own views aside. But now we have both the time and the space for that again. The Code of Conduct specifies the GDPR and the relevant Dutch privacy legislation for health research. In the period between 2016 and 2018, I was intensively involved in the lobby by researchers and patient organizations to convert the extremely strict version of the GDPR for health research into a scheme that would leave more room for research without consent. The Wellcome Trust coordinated that lobby and, among other things, created the site ‘data save lives’. After a considerable delay, the Netherlands now also has such a site. But that’s where consent comes first, so now we have ‘your data saves lives’. This fits well within the Ministry of Health’s discourse on ‘your own data’. And if those data were really mine, consent to share them would be obvious.
But to what extent are those data in health care really ‘my own‘? The concept of ‘my own data’ does not only indicate that those data are about me. It also suggests that I myself would have done something to make that data possible. It is difficult to maintain that in healthcare. Without our solidarity-based healthcare system, access to healthcare would have been unaffordable for most. Without access to healthcare, there would be no patient data. If you turn to healthcare, you expect to be diagnosed and treated based on the best knowledge, skills, and tools available at the time. The result is new data. Knowledge, skills, and tools (such as medical devices) would not exist without the data of countless patients before you. Those are often millions, but the rarer or newer the disease is, such as Covid, the fewer there are. But even then, all possible data are collected to put your case in perspective, and everything possible is done to learn from others. Even in the case of new and rare diseases, we build on the knowledge about the underlying biological mechanisms of the vulnerable animal species that we simply are. If that knowledge is not there, we cannot help at all, as in the case of the dying aliens in the movie Arrival. Of course, there is also your own story. This is paramount in certain branches of healthcare, such as psychiatry. And elsewhere it is more of a mix. In the case of chronic diseases or disorders, it is about how you deal with (and whether you want or can deal with) the associated challenges, and how you can be supported in this. Also, with the more objective branches of medicine, you decide whether you accept the proposal to do this or that, from diagnostic procedures to treatment. But the questions you are asked and the options the professional will suggest, before, during and after the treatment, is always in the perspective of what we already know or think we know, thanks to all the previous knowledge, skills and tools.
Where does that ‘my own data’ come from? There are two related causes: seeing the patient as a consumer of care, and the liberal thinking where ‘my own’ comes first. Both fail to recognize what healthcare is or should be about. The patient is also the product of how we have arranged things (e.g., product and food safety), healthcare and the healthcare system. That is a system of solidarity or as solidarity as possible based on the contributions of all of us. If I would like to be too cynical, it now seems like this: “We curtail your health care benefits, but it is your data”. But that would too easy rhetorics. Healthcare must remain sustainable and that requires difficult choices, see for example the report of the Netherlands scientific council on government policy. Years ago, I made a very modest contribution to the current organization of the health care system in Netherlands by refuting some European law arguments against such a system. You also expect that honesty in the debate about patient data for a learning health care system. The government itself also collects a lot of data for the management of the health care system. Consent is not involved there. Otherwise, you no longer have a healthcare system. I have never understood why this would suddenly be completely different when patient data is reused for scientific research. I am aware, of course, of most of the publications about autonomy and self-determination but they have not convinced me. They are overly caught up in the liberal discourse that is certainly not appropriate here, with the accompanying factually incorrect premise of ‘my own data’. Of course, it must be ‘bona fide research’ and secure data processing. We naturally assumed this in the discussion about the EP version of the GDPR and the ‘data save lives’ I started with. And, unlike in the present Dutch debate, we used a neutral term to indicate what care and research is all about: ‘data’ that, in addition to a meaning for yourself, also has a collective function. Without that collective function, that meaning for ‘your own’ would be non-existent.
Evert-Ben van Veen
22-11-2021