Stakeholder Focus Group Meeting, 18 Nov. 2020

Addressing Global Data Sharing Challenges – What did we learn from COVID-19?

Global data sharing is challenging and time-consuming. Heterogeneity across data collection efforts, ethical concerns, privacy issues and other sociological and technical complexities can slow down large scale global data sharing initiatives. 

Mid-march 2020, the MS Data Alliance (MSDA), a global multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments in people with Multiple Sclerosis (MS), was contacted by the Multiple Sclerosis International Federation (MSIF). As the COVID-19 pandemic unfolded across the globe, there was an urgent need to gather and share information to enable evidence-based decision making on the clinical management of Multiple Sclerosis (MS) during the pandemic, and to inform future research.

To accomplish this, the MSIF and the MSDA teamed up together with many other stakeholders and data partners and initiated the global initiative referred to as the “COVID-19 in MS: a global data sharing initiative” (GDSI). Adhering to unseen timelines, we managed to achieve insights on the effect of COVID-19 in MS within a few months.

During this virtual MSDA Stakeholder Focus Group, we reflected upon the major lessons learned during this initiative and brainstormed on how we can incorporate these lessons in our ambitions moving forward. We are happy to share with you the output of the meeting.

GDSI Stakeholder perspectives and lessons learned – interviews:



What did we learn in 2020 and what should be our ambitions moving forward? Break-out sessions: