Academy Strategic Focus Area 3
Promote trustworthy and transparent practices in the use of real-world MS data
The MSDA aims to support greater understanding within the community about the use of real-world data (RWD). Therefore, in this strategic focus area we promote trustworthy and transparent practices in the use of RWD. Data custodians need to be informed on the importance and mechanism for safely and respectfully sharing data.
Our aim is to deliver two online workshops in 2021. Candidate topics are:
- Patients data and potential use (value of evidence-based data for research, value of evidence-based data for public authorities, what are the needs in the context of the pandemic)
- Data collection systems – how does work and how can patients contribute?
- Data sharing
- FAIR principles
- Develop a data sharing agreement template
- Good data protection practices
- Codes of conduct for research staff