MIDATA.coop enables citizens to securely store, manage and control access to their personal data by helping them to establish and own national/regional not-for-profit MIDATA cooperatives.
MIDATA’s initial focus will be on health related data since these are most sensitive and valuable for one’s personal health.
MIDATA cooperatives act as the fiduciaries of their members’ data. As MIDATA members, citizens can visualize and analyze their personal data. They can actively contribute to medical research and to clinical trials by providing access to sets of their personal data across cooperatives.
Copies of personal data are stored in citizen-owned and citizen-controlled MIDATA cooperatives. Members profit from data analysis, visualization and interpretation tools. In this way, members will increasingly be able to take control over their own health.
In the same way that blood banks and citizen science platforms work best when no financial incentives are offered, MIDATA cooperatives are not-for-profit. Revenues will be reinvested into services on the platform and into research projects for the benefit of society.
MIDATA cooperatives offer an innovation platform (APIs) for third parties by providing a secure sandbox in which to develop data analytics and visualization services on members’ data without having to establish their own data storage environment.
Transparency is ensured by the fact that the governance principles of MIDATA cooperatives are public. Members are informed and can participate in decision making processes. They can also withdraw their personal data at anytime.
Data are multiply encrypted and only the members possess the key to their data. Every data access is logged. Secure citizen-controlled data access across different national cooperatives will be established to permit global research projects and clinical trials.
The MIDATA model enables the construction of regional/national cooperatives which, by a set of common rules, permit global research projects to be set up and carried out in a fair and democratic manner.
Citizen-controlled secondary use of personal data is a new model of data access sharing and data integration. We are developing an ethical and legal framework for governing privacy, data ownership and consent in biomedical citizen science projects using citizen-generated data held and controlled by the citizens in a cooperative structure.
The MIDATA IT Platform is being developed by Serge Bignens, Alexander Kreutz, François von Kaenel and Donald Kossmann. It is based on open source software. The first pilot project on the platform has started in May 2016. The source code will be available on Github in Q1 2017.
André Golliez and Ernst Hafen together with the board of the Association Data and Health have initiated a discusssion on a constitutional “right to a digital copy of personal data being processed electronically”. National council member Fathi Derder took this discussion up and prepared a postulate in the national council. The federal council has accepted this postulate and will discuss the “Right to a Digital Copy” in the revision of the data protection law.
A project at the university hospital in Bern focuses on patients that have undergone bariatric surgery. The influence of physical activity on postoperative well-being is investigated. Patients measure their weight with an intelligent scale and their daily steps with a step counter and they use a dedicated smartphone app. The data are stored in their MIDATA account. With the mobile app, they are able to follow their progress and can complement these data with a self-evaluation of their well-being. With the consent of the participants these data are used in pseudomized form for the study that is lead by Dr. Philipp Nett. The first feedback from patients is positive. They find the app useful and trust the data security of the MIDATA platform.
In collaboration with Prof. Roland Martin at the neurology clinic at the university hospital Zürich we are testing the effectiveness of a new treatment for patients with chronic multiple sclerosis. Data will be generated by the physician, patients and sensors that patients wear and, will be collected on the MIDATA platform.
Healthcare systems differ widely in different countries. The needs of people to maintain or regain health, however, are the same globally, as is the need to control the use of personal data. Therefore, we are supporting local partners to establish MIDATA cooperatives in their countries. Currently we are working with partners in Germany (Charité and Berlin Institute of Health), the Netherlands (Medical Delta, TNO) and in collaboration with INDEPTH-Network.org in Ethiopia and Vietnam. We see a great potential for LMICs in the democratic control of personal data for healthcare, public health and a fair and sustainable data economy. Please consult the MIDATA flyer which lists the framework and conditions for a collaboration with international partners.
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