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Empowering the individual through human-centric data governance in a world loaded with power-asymmetry: reflections on the MyData 2019 conference

by Gaston Remmers
Director at Stichting Mijn Data Onze Gezondheid

The MyData-movement is a unique blend of international societal, business, technological, legal and governmental stakeholders grouped around a concept that positions the individual citizen as the central entity through which any data use should be ethically endorsed. The 4th international conference held between 25–27 of September 2019 in Helsinki was a truly exemplary exhibit of the dynamic and pro-active interplay between the stakeholders, bringing together over 1000 people from over 40 countries. It is palpable that in Finland a remarkable blend exists of digital awareness, foresight, technical prowess and social organizational power, that has given birth to the MyData Global community. Anyone interested in more than money or technique alone, should go there and connect.

However, between the lines a few observations can be made that in my view need urgent response in order to make sure the movement doesn’t overshoot its own potential, and unintentionally bypasses its own purpose: enabling human-centric data governance. As Kathryn Dow of Meeco said in her opening address: also the MyData approach will be designing its own shipwrecks. A bold and necessary statement, as it hints to the reflexivity needed to identify future icebergs swiftly and continuously and to navigate around them. This writing identifies a number of icebergs, while pointing out escapes: the collective nature of individual empowerment, reciprocity, purpose and support for social.

The collective nature of individual empowerment

First, the MyData concept, in all its eloquency, is essentially crafted from an individualist, neo-liberal perspective. The discourse is on empowering individuals by improving their right to self-determination regarding their personal data. It hereby neglects the fact that citizens will be approached in the very near future by dozens if not thousends of businesses, administrative bodies, researchers and the like requesting them to consent to the use of their personal data. In other words, the individual continues to drift in a jungle of data-hunters, eventually being numbed by the enormous amount of requests that no doubt she will receive. This will convert the MyData concept into a blunt sword in practice, just as the GDPR will lose its powers once everybody complies with it. What we need are collective structures that create a shield between the individual on the one hand and the data-hunters on the other. Collective structures that on behalf of the individual examine the ethical dimensions of the data request. The presentation of Ingrid Schneider from Hamburg University was in this respect very insightful. She highlighted 4 possible avenues that could provide protection to individuals in an era of power asymmetry, ranging from a purely individualistic micro-consent approach, allowing for micropayments at each point of data-exchange, to classifying data as a public good, open for anyone and based on an infrastructure paid for by the government, to data as common pool resources operated by self-organised communities, and finally to fiduciary trusts, independent bodies to which you hand over the right to operate on your behalf. In my view, these different avenues should be thoroughly examined and questioned from a socio-economic and political perspective, especially in their capacity to counteract the asymmetry in power between data requesting parties and individuals. At the MyData conference, a number of those early collective structures were present, such as Saluscoop from Spain and the Holland Health Data Co-operative and Schluss from The Netherlands. Not in vain they represent bottom-up movements, and not in vain two of them deal with data in health — a very volatile domain. Hence, probably the most important session at the MyData conference was the one that explored the characteristics of so-called MyData operators, defined as ‘intermediaries that, within a trust framework or ecosystem, have fiduciary responsibilities for the individual’. I much appreciate the effort. At the same time I believe that the intention to generate a generic framework that caters for a great diversity of future operators in different domains, should go hand-in-hand with a proper analysis of their ideological backdrop: do these future MyData intermediaries really take a stance in protecting individuals, and on what grounds? Do their organizational structures contain warranties that they remain on purpose? Are they capable to shield off individuals from an (overload of) data requests? Especially so from those that do not match their interests or that lure them into a data exchange on false grounds or that may even do them harm? Hence, a characteristic of successful MyData intermediaries will be their explicit moral and ethical profile.


Second, I observed relatively little attention for the reciprocity in the data exchange. People vary in their demands of what they want in return for the sharing of their data. Yet, so far I have seen very little explicit effort to list the possibilities in this, the focus has been basically on how to organize the consent legally — something to get from the individual. The need and type of the ‘return-on-investment’ for the individual citizen depends entirely on the purpose of the data use and individual preferences. These returns can be insights in the results of the research done with the data, a personal lifestyle advice, better municipal health policies, vouchers that enable you to buy healthy foods or sustainable products, free product upgrades, etcetera. Again, the asymmetry in power makes individuals vulnerable to propositions that seem very attractive, especially to people in lower socio-economic classes, and often proposed at moments that they are ‘hungry’. And we all know that it is not a good idea to go shopping in that condition, because you will buy the food that will do you harm. Hence, we need to start discriminating between feedback proposals that are benign and those that are not. Again, there is a role for collective structures in this.


Third, with all the technological advances at hand, it sometimes seems that to generate systems that enable digital data flow becomes an end in itself, instead of a means to a purpose. I felt uncomfortable overhearing the municipality of Helsinki proposing that by combining data sources of different kinds, the city would be able to identify groups in society that seemed at health risk, enabling it to pro-actively approach these groups with aid or suggestions to see a doctor. This indeed is a technological possibility, but it should not lead us away from simpler and more human ways to identify groups that need help: simply talking to people, listening to them, looking them in the eye and connecting from heart to heart. Let’s call it old school social work, or participatory research, or interactive policy making. It can be aided by technology, but technology should not replace it. So the questions: ‘for what purpose do we do this?’ and ‘are there more human and simpler ways to achieve the purpose without the need to rely on digital services?’ should be weighed at all times in the development process of digital infrastructure.

Support for social, not only for business

Fourth, even though I have much appreciation for the business that have the guts to innovate into a more human-centric data economy, the support that these business may receive from governmental business bodies such as Vaka and economic think thanks such as Sitra (both in Finland) is in strong contrast with the support that civic movements may encounter to develop the social structures to counteract the asymmetry in power. Usually a business model underlies the rationale to support business development, yet the ‘value’ produced by social structures is much less tangible — but not less important. I was happy to see that the Next Generation Internet programme of the EU is a step forward to support smaller business and initiatives to come up with potentially powerful solutions; yet, the facility does focus on technical proposals and does not cater for the crafting of social innovations that deliver essential socio-cultural components of the new data economy. I believe this is a void that should be filled both by national and international entities. It can’t be left to regional or local bodies alone, as they often lack a view on the global challenges and the far reaching consequences of the digital society — consequences that Alexander Stubb, vice-president of the European Investment Bank and former Prime Minister of Finland, eloquently presented in his keynote.

In sum, the 2019 MyData conference was one of great inspiration and intensity. We know not all shipwrecks can be avoided. But some are so easy to recognize that we almost forget to pay explicit attention to. Let’s work it out.

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Salus Coop

Salus Coop

Salus Coop aims to legitimize citizens’ rights to control their health data to accelerate research innovation in healthcare