Medical Data Donors was founded on the 24th of January 2018 and the aim is the collection of donated medical data for medical big data research & development but always under strong ethical supervision with permission for “crowd sourcing”.
However, we also increase awareness of patients what is happening to their data. Therefore, we desire patients to willingly donate their data for research.
During the donation, patients get access to a transaction number that can be used to revoke the permission to use the data.
In order to make the data useable, we desire to annotate the data by users over the internet that play a (serious game). These labels are then used to train machine learning algorithms to support medical diagnosis and treatment of the future!
Donors voluntarily give their data after an exam. The consent can be withdrawn anytime and obsolete data is deleted.
Donors can benefit from donation to find publication using their data and use algorithms on their own data (later stage). Also Researchers can use data and annotation. Only the actual storage and handling cost has to be paid (by academics). Data can be shared world-wide under EU data protection laws. Any research must be conducted under ethical review by “The researcher´s institution” and Medical Data Donors.
Medical Data Donors is actively asking patients to donate their data after an exam without pressure after the diagnosis is secured. We employ envelopes in which data and an respective informed consent form are submitted to our offices. We will employ gamification to find supporters to help annotating the submitted data online.
Data is annotated by lay persons for example students of medicine or medical engineering or other interested persons. When difficulty increase with level (from simple landmarks to organ outlines) and players trains at the same time annotation is done using gamification. Additional Social Media integration and high scores should attract and sustain more players.
We had a wonderful first seminar at FAU Erlangen-Nuremberg in Summer Term 2019. Within the seminar, we were able to create multiple “annotation games” in the context of Medical Data Donors e.V. You will find short descriptions and download links for Android on our games page.