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A new company, Hu-manity, has launched with the goal of giving patients control over their own data using blockchain technology from IBM. The company doesn't use that language, however, they purport to give users "ownership" of their data which, to be honest, is unlikely at best.

The blockchain used in the app will track ownership of data but not the data itself. The x-ray from the hospital isn’t held in the app, it is still in the EHR. The record of heart rate isn’t in the app either, it’s in the Health app on your iPhone (or Android equivalent -Ed.). In all these cases someone else is the holder of the information and it is not clear that the patient is even the owner.

In general, ownership of information belongs to the individual or company who created or authored that information. For example, intellectual property laws protect “original works of authorship.” Medical records represent professional medical opinions of a physician or a medical institution, and therefore may not necessarily be the patient’s property. – Forbes

Setting the absolute ownership of data aside, the company has are more mercantile business model: they want to broker data deals between individuals and the companies that want to use the data. This makes a lot more sense and could actually work:

By the time they reach a million users, they believe that will be enough people to represent the first cohort of users and they can begin to negotiate a cost structure with data buyers.

The company talks about making data ownership the 31st human right (from the UN’s Universal Declaration of Human Rights from 1948) and calls the app #My31. This is a noble goal, to be sure, and it sure will be interesting to see it in action during the first court case against an EHR vendor.



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