How to become a “citizen scientist” 

The MIDATA platform, run by the MIDATA cooperative, offers individuals the opportunity to become “citizen scientists”. By contributing their personal health data, users can actively participate in advancing scientific and medical research. Users of the platform can choose which data they wish to share, giving their consent for specific subsets to be used by third parties (e.g., start-ups, IT providers, research groups) for particular research or data-driven services.  

The platform is designed to manage the use of health data transparently and fairly, giving account holders substantial control over how their data is shared, whether for social, commercial or research purposes. MIDATA ensures that the platform’s infrastructure meets users’ need for privacy and control while upholding high standards of data security.  

Users can participate in a variety of health-related projects. For example, one project tracks cognitive abilities over time, while another helps individuals with addiction issues by promoting self-awareness and self-regulation. In these projects, users not only share data for research, but also receive statistics and suggestions based on the insights gathered. All data from these projects is securely stored on the MIDATA platform.

Users of the platform can also choose to become members of the cooperative. This membership grants them not only control over their data, but also a voice in the governance of the cooperative itself.

The cooperative does not collect or analyse the data. Instead, it serves as an intermediary, enabling individuals to decide which data they want to share and with whom. Organisations or researchers who wish to use the data for specific projects can then access the appropriate databases or contact users who have agreed to share their information.  

The cooperative's staffing structure is primarily administrative, with external experts managing the technical aspects of the platform. These professionals come from the academic community that gave rise to the cooperative, even though they do not directly participate in its operations.  

The MIDATA cooperative intentionally avoids the commercialisation of data, adhering to two key principles. First, there is an ethical stance: personal data is seen as an inalienable asset, much like blood or organ donation. Commercialising such data would be unacceptable because of the inherent social value attributed to it. Second, from a practical standpoint, the cooperative believes that trust, not financial incentives, is the foundation of its model. Users are encouraged to share their data because they believe in the collective utility and validity of the research projects, not for monetary gain. Additionally, the value of data emerges when it is aggregated. Data tied to a single individual has little intrinsic worth. Therefore, paying users for their personal data would not only be unethical but also impractical, as it would not make sense to remunerate data that only becomes valuable when shared collectively.  

As discussion continues around personal data sharing at the European level, the resulting regulatory framework will significantly shape the future of cooperatives like MIDATA.

The cooperative’s model – where members play an active role in governance – ensures that the interests of individuals are prioritised. By participating in the cooperative, members are not only in control of their own data, but they are also contributing to the collective good. The cooperative encourages collaboration among members to pursue shared goals, using personal data as a common resource to advance medical research.  

Third parties, such as start-ups and research groups, can connect with the platform to offer data-based services, providing additional value to account holders. By maintaining a focus on collective interests, MIDATA fosters an environment where the use of health data drives innovation in medical research, while always prioritising the rights and control of individual contributors. This model ensures that the data remains a shared resource benefiting everyone involved and supporting projects that hold long-term societal and medical value.