Would you put your health data into a coop?
Later this year a Swiss initiative, MiData, will be launching a “health data cooperative”. This will be an online repository for all kinds of health data including medical records as well as exercise, diet and sleep data (I got most of my info for this post from the Platform Cooperativism site).
For users this will be a secure way of storing their health data in one place (something which currently can be quite difficult) and allow selective access to particular people or organisations (perhaps your GP, dentist or particular medical researchers). For a fee users can also become members who can cast votes on how the coop is managed and elect a board of directors.
The coop will mostly generate funding through fees paid for access to the data by researchers or companies with profits reinvested in the organisation (there will not be shareholders). Individuals will be able to refuse access to their data to particular organizations or companies and the membership will be able to vote on who is accepted as a client.
MiData hope to become the primary, centralized source of health data which will be stored in a standardized format. This is an initiative which will be driven by market forces as well as cooperative ethics. They are proposing an app store which might, for instance, feature products which offer personalised training regimes based on all of your collated data. They foresee the potential for “free market forces” in their app economy to drive “standardization of health data markup”. It is proposed that this would encourage a general standardization of data standards if users were to pressurise their healthcare providers into formatting their data in a way which will be suitable for the apps they want to use.
I can certainly imagine their might be consumer desire for these kinds of apps as existing fitness apps hoover up users’ data and present back stats and do little esle. They often claim to offer a guidance but in reality offer little in the way of a personalised experience. Also, if you want to switch to a new app you usually have to start accumulating data all over again. Other apps such as Vida (for more on this see my podcast interview with Nick Fox) are emerging which provide a platform for connecting personal trainers (and other health or fitness professionals) with users. The MiData app economy could offer a way of bringing these together and providing potential for machine learning and AI interfaces.
I would be very interested to hear what medical researchers think about this as it strikes me as a solution to a computing, market and potentially political/ideological (more on this below) problem rather than a medical one (which is not to say that it wouldn’t be medically beneficial). The excitement seems to be for the potential for standardisation and integration of data and a desire to be the dominant network. A (collectively owned) Facebook for health.
While for data privacy reasons allowing individuals to opt out of studies because they don’t want to give access to a particular organisation is important this can be highly problematic for research purposes. For instance, for randomised controlled trials this could leave gaps which might invalidate a whole study. The research model seems to be closer to that which is being developed by digital corporations moving into health research (eg. Apple, Google, Facebook) rather than traditional medical research. The former are more concerned with scale of data rather than quality and through their dependence on voluntary participation (the same for MiData) are likely to have skewed demographics. For more on this see Tamar Sharon’s excellent work on the Googlization of health research (and my podcast interview with her).
A big motivator for the development of MiData is part of a political struggle to wrestle control of data away from corporations and states and to put it back into the hands of the people. The MiData software is open source which would allow others to develop their own versions in other countries but the founders also hope that it might establish a model for the collective management of all personal data.
The project has gained support from Platform Cooperativism group based at The New School, New York. They see MiData as an example of the potential for resistance against those currently controlling our data. They say:
“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.”
There is certainly some potential in this but there are also dangers.
The cooperative system might be democratic (at least for those who are paid up members) but this also means it will be subject to political pressures and manoeuvring. Decisions on which companies or organizations should get access to the data whether through votes by members or by board decisions are not likely to always be taken on purely ethical grounds. It is likely they will be subject to the interests of particular members and especially so if individuals or interest group gain power in the coop.
There might also be dangers to having central repositories for all data. Certainly if they did become the main repository for health data they will be a very big target for attacks by hackers (whether these are of the bedroom, anarchist or state backed variety).
The optimism shown for MiData is part of a broader advocacy for “Platform Cooperativism” by the group from the New School. This is a kind of alternative to “Platform Capitalism” which is built on the principle of using technologies and systems similar to those behind Uber and Deliveroo but with workers in control rather than corporations.
This is certainly an interesting idea which could have potential to challenge some of the worst aspects of contemporary capitalism. While there is a long tradition of workers’ cooperatives on which to build for health data cooperatives to work we might need to look elsewhere for inspiration as well. For instance, the NHS has a long history of managing health data for the public good albeit in a paternalistic and sometimes problematic way.