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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.