Why ownership of your health data does not make you an empowered citizen

By Raffael Himmelsbach. Originally published on Centre for Digital Life Norway.

In the digital age, the right to one’s own health data should not be mistaken for a real voice in shaping the direction of health technology development, writes Raffael Himmelsbach, DLN’s coordinator for responsible research and innovation.

While on vacation this summer in my native Switzerland, I went to see the dentist. Learning that I now live abroad, she asked if I wanted a copy of my patient file to take with me to Norway. This is an example of data portability that empowers me, as a patient, to reuse my health information at a future point in time. It is an anecdote from 2019, yet it could have just as well been a story from 1989 – photocopiers and printers were already in existence then. 

Digitization is transforming the health sector, reshaping how we do research, develop new therapies and treat patients. My recent data portability experience looks quaint compared to the promises of digitization. The Xerox in the age of AI? What a joke, you might think. Yet when we consider that there can be no technological change without changes in the social structures that enable new technologies to be used in practice, we very quickly discover that change processes happen at different speeds. 

Let’s consider the question of governance. We live in a democracy. Given how pervasive the influence of technologies is on our lives, wouldn’t it be reasonable to expect that technological progress should be governed democratically, at least to some extent? 

Listening to researchers giving talks on different aspects of the digitalization of healthcare, I repeatedly hear the same narrative: Citizens should agree to share their personal health data because this drives progress. In return they are to expect future health benefits. Since people feel uneasy without some level of control, they are promised ownership of their data in the form of opt-out consent. 

But does ownership of one’s own data constitute an effective form of democratic participation in shaping the direction of future technological developments? Let’s unpack some of the assumptions at stake.

Firstly, today’s visit to a physician creates ever more data about the state of our health, but also about non-pathological traits, and, increasingly, also information about our genome. Our bodies are under unprecedented surveillance.

Secondly, in order to derive meaningful insight from this volume of health information about an individual person, it has to be related to data from many other individuals through statistics. This brings in new social relationships: diagnosing my health status requires not just data about my own body, but also of other bodies. Conversely, I am no longer the exclusive beneficiary of the data describing my body. “One for all, all for one” is a fitting slogan.

Thirdly, as more data is aggregated and statistically mined, we expand the diagnosis of present illness to probabilistic predictions of future pathology. All humans become pre-symptomatic – the definitions of illness and patient become fuzzy. Prevention and overdiagnosis become relevant topics, but it’s not an either/or future as these phenomena will likely coexist. 

Fourthly, there is a new intermediary in the therapeutic relationship as statistical technologies nudge themselves in between physician and patient. This also changes how economic value is extracted from health services since somebody owns the intellectual property behind that technology. The solidarity implicit in “one for all, all for one” now has a marketable benefit. 

In conclusion, consider the following analogy. Imagine data describing your body as a brick. Now an architect approaches you and makes you an alluring promise about building a community centre, which can only be built if most of the community members donate their bricks (one for all, all for one). The only influence over the project you have is to donate or withhold the brick (consent). If you choose to donate the brick, you have to unconditionally trust the architect to realise their promise, rather than to building a luxury condo, or a megalomaniac airport that will never serve people since it’s being built in a remote desert. If too many choose to keep the brick, there won’t be a community centre, nor a desert casino or an abandoned airport.

So, would you say that owning your health data empowers you as a citizen? There is still a lot of thinking from the Xerox era in the current digitalization moment, especially when it comes to the literacy of social relations and how technological change affects them.