We recently had the chance to speak with Ernst Hafen and Ulrich Genick of MiData (pronounced my-data), a Swiss cooperative that aims to restore users’ data privacy through an innovative market solution.
Presently, the use of user data is mostly unregulated in the EU, with varying rights and privacy protections across EU member states which mostly stop at the requirement for consent and, thanks to “right to be forgotten” legislation, the deletion of collected personal data. In the United States, a patchwork of federal and state regulations safeguard various categories of data, e.g. financial data and video rentals, with a distinct lack of protections for personal data at large. As a result, personal data is collected by innumerable parties and ultimately used without the knowledge or (active) consent of exploited ‘data subjects.’ From the tracking cookies which document our movements across the Web to the flows of information generated by FitBits and other devices associated with the “quantified self” movement, personal data about our on- and offline activities is collected, bundled, and sold for massive profits. The emerging ‘asset class’ of personal data is estimated to reach $1.4 trillion by 2020 for European citizens alone.
With MiData, set to launch in Q3 2017, the citizens of the world may have a chance to take back this value which they generate through cooperative action and improve their own healthcare in the process.
MiData has termed itself a “health data cooperative,” offering a platform on which user-members can upload copies of their medical data, as well as alternative streams of information such as diet, exercise, and sleep metrics which have become more easily accessible through the rise of mobile devices (so-called “mHealth” data). Hafen and Genick were also very interested in genome data, insofar as it represents a category of information that currently does not exist in aggregate. The collection of these diverse streams of information into a single source, they said, could very well bring about a new age of “precision medicine” whereby treatments become highly targeted to individuals and their habits and all the more effective because of it.
MiData’s cooperative structure allows users to engage with the platform without becoming cooperative members and offers membership for a small fee. Members will govern the cooperative through a general assembly based on the principle of one-member-one-vote, including electing a governing board of directors and choosing where the cooperative will invest its profits. Though MiData will be a cooperative specifically for Swiss citizens, the software it has produced is open-source and will be freely licensed to any other data cooperative that meets their guidelines. Talks are underway to begin a German health data cooperative. MiData’s next challenge in its pursuit of a global federation of data cooperatives is developing software which will facilitate the secure sharing of data between these national instances.
By becoming a dominant health data repository, MiData hopes to become something of a gatekeeper for this data, attracting non- and for-profit researchers while allowing users a high degree of control over who can access their personal data. For example, one’s physician might be given access to all personal data through the platform, while a non-profit cancer research institute could be given access to only medical and dietary information; users could deny access to an exploitative for-profit drug company, or even for-profit researchers in general.
Those companies who do seek out the information held by MiData cooperative will serve as the cooperative’s source of funding, paying a fee to use the data in their research. Revenues collected will be used to pay for administrative overhead, and any leftover profits will be invested under the guiding hand of the cooperative’s general assembly made up of its user-members. Interesting to note is that, in the cooperative’s bylaws, these profits cannot be paid back to user-members as dividends but must rather be invested in projects and research of some benefit to the public. Hafen compared this strategy to that of blood donations which find more success when they do not offer a financial incentive to donate.
Alongside this use of data for research, MiData will also support a native app economy not unlike that of Apple and Google’s mobile-app marketplaces. With these apps, carefully vetted by a Data Ethics Committee, users will be able to make use of their own data; a marathon training app, for example, might combine a user’s sleep habits, BMI, and diet to generate a fine-tuned exercise regimen to shave a few minutes off of their mile time. Hafen and Genick were particularly excited about the possibilities of this app economy, going so far as to suggest that by its free-market forces the world might even see a standardization of health data markup which is now irregular not only between countries but even hospital to hospital. Were users to require their data in some particular format to make use of a popular app, they might very well incentivize their local healthcare provider to provide them this data in such an emerging standard.
Though MiData has not yet launched, they have already found major success. The cooperative has funded much of its own development via paid research trials which provide not only users for the platform — for example, one study asked post-bariatric surgery patients to use the app to monitor their recovery — but also proofs of concept that have attracted the attentions of additional researchers. The platform has also engaged in “citizen science” projects, led by Genick, which seek to demonstrate its capabilities by providing a fun space for user engagement. In one such trial, users were sent samples of compounds which they ingested. They were then asked to note whether or not their urine smelled of asparagus, the result of which was compared to their genome data in order to locate the gene which causes this effect. Genick noted that the cost of such trials are usually in the millions, while MiData was able to successfully run them for tens-of-thousands.
While much of our conversation centered around health data, it was clear that the ideological ambitions of Hafen and Genick are grand: they hope that MiData might set a model by which all personal data can be defended from lawless exploitation, with its value returned to the publics who create it. MiData’s immediate goal, however, must remain the protection and cooperative monetization of personal health data. This is because, at its core, the MiData platform relies on users voluntarily uploading their data, and thus these users require access to the data which they are to upload. Presently, personal health data is one of the few kinds of data to which citizens of the world have the “right of access,” a right to a copy of the data collected about them. While enhanced EU data protections legislation will come into effect in 2018, requiring that all data collected about EU citizens by companies across the world to be accessible to the data subjects who generate it, for now the scope of the MiData cooperative will be pragmatically limited.
We are absolutely taken by MiData’s early successes, and wish them well with their upcoming launch. We all ought to be reminded by their innovative model that platform cooperativism is not only about a one-to-one replacement of sharing economy apps with cooperatively owned solutions. The cooperative seizure of yet-exploited markets represents a meaningful avenue of struggle.