Data stewardship for your research project
The data platform used by MIDATA was developed by ETH Zurich and Bern University of Applied Sciences. The platform allows citizens to collect their health data and to freely decide upon data use in research projects. They thus can actively contribute to medical research as “citizen scientists”.
The platform model allows the separation of the IT platform (data storage, access and consent management) from the data applications (mobile applications) and thus enables an open innovation ecosystem. Users will have access to various data services and can decide to participate in research projects. Start-ups, IT service providers and research groups can offer mobile apps on the platform, for example health apps or apps for the management of chronic diseases.
The IT platform is operational and is currently used in several data science projects. In one project, patients after a gastric bypass operation record their condition, fitness and weight at home and share the data with the attending physician at the Bern University Hospital. In another project at Zurich University Hospital, patients suffering from multiple sclerosis are testing the effect of treatments using a tablet app that assesses their cognitive and motor status. Other citizen science projects such as the allergy app Ally Science have been successfully launched.
The MIDATA platform
MIDATA Cooperative has established a governance model and IT platform solution for citizen-centered and patient-centered health data aggregation, allowing citizens and patients to give dynamic and granular consent to data use.
The MIDATA platform embodies modern data governance principles, enabling health research and health services, while at the same time ensuring citizens’ and patients’ sovereignty over their personal data.
The platform founds on advanced database and encryption technologies developed at ETH Zurich. Its FHIR API enables interoperability and use of structured data. The platform acts as a hub for a mobile app ecosystem. The platform and app framework are operational and being further developed in the context of the SPHN initiative and further national initiatives (among else, participation in SPHN, PHRT and SDSC projects).
Main platform functions:
- Storage of structured personal data in FHIR format using SNOMED and LOINC ontologies.
- Storage of binary data and documents.
- The platform allows account holders users to create and manage consents that define criteria for sharing the data of an individual with other users, groups of users or third parties.
- The platform allows account holders to grant applications access to all or parts of their data.
- Different account types suited for the different user roles like researchers, health care providers and regular account holders.
- Management of plugins and applications that use the platform as a source and target of data.
- Web portal that allows the management of accounts and consents and works as a container for plugins that offer functionality using the data stored on the platform.
- Definition and conduct of data projects (studies) on the platform.
- Interoperability via FHIR API: Fast Healthcare Interoperability Resources (FHIR) is a next generation standards framework created by HL7. FHIR is designed to enable the exchange of healthcare-related information. This includes clinical data as well as healthcare-related administrative, public health and research data. It is intended to be usable world-wide in a wide variety of contexts, including in-patient and ambulatory care. FHIR is seeing a fast rise in health IT, with broad adoption of the standard.
Main safety and security features:
- The platform is hosted in Switzerland, on redundant servers.
- Yearly external security audits.
- Data are encrypted using multi-level encryption, allowing granular sharing of specific data sets.
- Account holders may encrypt their access key, precluding server-side data breaches.
- Two factor authentication available.
- Data traffic from and to server via HTTPS. Connection and all safety tokens using perfect-forward secrecy.
A MIDATA partnership – transparency and safety
Are you operating a health platform, a fitness or a lifestyle application through which your customers generate data on activity, health or wellbeing? The hosting and administration of such data is demanding and coupled to increasing risk. Within a MIDATA partnership, you can delegate all processes regarding data safety and data protection and create more autonomy, transparency and safety for your customers and your business.
MIDATA can support you in all processes, from product concept to launch.
Further MIDATA service offerings
MIDATA can support you in all processes regarding planning and implementation of research projects or launching of health and lifestyle apps. Extended services are offered either through MIDATA or in collaboration with partners (ETH or BFH).
Further service offerings:
- Concept and/or development of mobile apps (iOS, Android, web)
- Consulting and support regarding documentation and applications for ethics approval
- Consulting and support regarding consent management
- Customer and participant recruitment
- Communication and media relations work
- Marketing and customer support
We would be happy to talk to you personally and learn more about your project and the type of support you desire.