MIDATA.coop is a Swiss cooperative that gives people control over their medical data. Users can collect a variety of health-related information, including their hospital records, data produced by fitness trackers, and other experiential data, and safely encrypt and store it in a local cloud. The user can then track their progress or share the data with whomever they want: their doctor, their family members, or relevant clinical trials where their data could prove useful.
One of the things that makes MIDATA.coop different from other data storage platforms is that it does not use monetary rewards to encourage people to share their data. As Dr Ernst Hafen, co-founder and president of the cooperative, said “We do not want to introduce financial incentives for data sharing because that’s exactly the wrong incentives. That’s what everyone does and we want to change.”
The primary motivation for people to share their data is to help with medical research they care about. Patients gain collective influence by pooling data together, creating a valuable resource which pharmaceutical companies can acccess, but only on certain terms (such as openness about the results of their research).
Any money made from this data is invested back into the community in ways decided by members of the cooperative, rather than provided as dividends to shareholders. This is an important aspect of MIDATA.coop’s model, which Dr Hafen strongly believes should remain a cooperative. His argument is that data is best seen as a common resource. Since everyone has similar amounts of personal data, whether it be number of heartbeats or genome data, everyone who contributes their data should have an equal say in how it is used.
Though a fairly young initiative (founded in 2015), it has already seen some successes. The first pilot saw post-bariatric surgery patients recording health data like their weight loss and sharing it with doctors investigating the postoperative recovery period. The latest study examines a drug’s effect on multiple sclerosis patients by analysing the data they input about motoric and cognitive capabilities on an app. From late 2017 onwards anyone will be able to join and become a member without an access fee.