Academy Strategic Focus Area 1

Raise awareness about the importance of research using real-world MS data

People with MS are key to establishing a trustworthy ecosystem for reusing health data for research and for learning health systems.

The MSDA aims to launch a multi-faceted campaign to engage people with MS in decisions about the use of their personal data, to inform them about data technologies and explaining how their success depends on the sharing of information. We aim to explain them how and why data can be used for care and research, what is allowed and what not and how personal information is kept safe.

To accomplish this, a close collaboration has been set up with the European Patient Forum (EPF) and their “Data Saves Lives” initiative.

In 2020 until 2023, the MSDA focusses on following objectives:

  1. To inspire through case studies: MSDA aims to supply 10 case studies over the next 3 years to Data Saves Lives. 
  2. To inform the patients through membership TC’s, F2F meetings, social media, …. 
  3. To educate its member organizations on how to engage the patients they represent in collecting RWD. 

We are currently working on:

  • developing an educational programme for patients.
  • cross-reference initiatives in other disease areas, and cross-cutting initiatives like EHDEN (European Health Data Evidence Network) national research infrastructure programmes and the European Health Data Space as evidence of this growing momentum.


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