MiData Coop

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= health data cooperative in the UK

URL = http://www.midata.coop

Annemarie Naylor:

"MiData is a health data cooperative. Once it is launched in earnest, it will offer a platform to which user-members can upload copies of their medical data, as well as real-time information from a range of mobile and wearable devices. MiData hopes to become a gatekeeper for this data, attracting researchers, while permitting users a high degree ofcontrol over who can access and make use of their personal data in the service of specific aims. Companies will pay a fee to use the data for research purposes, and any surplus revenue generated will be re-invested by the cooperative’s General Assembly – which is comprised of MiData’s user-members – in pertinent research projects with a public benefit mission.

Midata has already succeeded in funding much of its development via paid research trials to explore post-operative well-being after bariatric surgery and test the effectiveness of a new treatment for patients with chronic multiple sclerosis – attracting early users to the platform and demonstrating proof of concept to researchers. Looking ahead, although MiData will be a cooperative for Swiss citizens, the software it has produced will be freely licensed to other data cooperatives that meet its community guidelines, and talks are underway to establish a German health data cooperative in the first instance. It will also seek to establish a global federation of data cooperatives and is developing software to facilitate data sharing between them (Platform Cooperativism, 2017)." (https://futurecarecapital.org.uk/policy/intelligent-sharing-unleashing-the-potential-of-health-and-care-data-in-the-uk-to-transform-outcomes/)