We believe the perspectives of people with MS are central to establishing a trustworthy ecosystem for reusing health data for research and for learning health systems. We aim to launch a multi-faceted motivation campaign to engage people with MS in decisions about the use of their data. We collaborate closely with the European Patient Form and their “Data Saves Lives” initiative.
An informed and engaged patient community will lead to:
- increased compliance to data collection procedures (more specifically when it comes to patient reported outcome measures)
- increased patient-driven advocacy for the inclusion of patient relevant real world data in (regulatory) decision making.