On June 7, I presented at the Digital Enlightenment Forum “Trusted Data Management in Health Care” on the projects Prana Data, PIME and My data Our Health.
Prana Data, a “zwaluwproject” of the COMMIT/ programme is a collaboration between TNO, Radboud University, UMCG, UMC Maastro, Leven Met Kanker, Portavita, NPCF and Synergetics. The goal of the project is to investigate novel solutions for performing privacy respecting analysis of sensitive data (such as medical data) on an aggregate level.
In the project we bring together two groups of stakeholders: the research community and the patients community. Each group of stakeholders has different interests. The challenge is to design a governance structure and technical solution for data stewardship.
For the research community, the project supports the FAIR principle for making research data reusable. The university of Maastricht develops a proof of principle for the Personal Health Train architecture, which supports learning from distributed data repositories.
For the patient community, the project has developed the RESPECT4U label of governance principles and will develop a demonstrator to support patients in managing their own data for self management.