Your AccountPartnering with Expert Patients in the WISDOM Project: Shaping the Future of MS Digital Health Tools
25.06.2025
On 19 March 2025, the European Multiple Sclerosis Platform (EMSP) hosted a dynamic consultation meeting with the Multiple Sclerosis Community Advisory Board (MSCAB) and researchers from the WISDOM project. The meeting was part of the project’s Gate 1 co-design phase, where nine innovative digital tool ideas were reviewed and discussed.
The goal? To ensure that the development of digital health tools for MS is guided by real-world patient expertise and insights.
As one CAB member shared, “I felt very included and appreciated the diversity of perspectives.” Another added, “The meeting was engaging and respectful. It made me feel that our opinions genuinely matter.”
A Lively Dialogue with MS Advocates
MSCAB members — people living with MS from across Europe — shared their diverse perspectives on tool feasibility, relevance, and usability. Discussions were lively and inclusive, reflecting both the hopes and the concerns of patients who are eager to see new tools that truly meet their needs.
One participant noted, “It was truly a dialogue – not just a presentation.”
Top-Ranked Tools: Personalised, Practical, Patient-Focused
The CAB’s voting exercise highlighted a clear preference for tools that promote personalised care and support shared decision-making. Ideas like a personalised intervention strategy, disease progression trajectory, and personalised intervention monitoring received the most enthusiastic endorsements.
At the same time, participants voiced thoughtful caution around predictive tools that might cause anxiety if not accompanied by clear clinical context. Data privacy, ethics, and risk communication were recurring themes in these discussions.
As Professor Uffe Kock Wiil from the WISDOM project team shared:
“I have recently interacted for the first time with the EMSP Community Advisory Board (CAB) in relation to development of AI tools for MS decision-making in the context of the WISDOM Horizon Europe project. I did not know what to expect, but I was very pleasantly surprised. The feedback from the CAB members was very useful for our future tool development process, and I already look forward to the next CAB meetings.”
One CAB member summed up the atmosphere perfectly: “The openness to feedback and the researchers’ attitude was very reassuring.”
Key Takeaways and Next Steps
The CAB’s recommendations will directly inform the WISDOM Assessment Panel’s decision on which tools to advance to concept development. These recommendations include prioritising patient-centred design, embedding ethical safeguards, and ensuring that digital tools integrate seamlessly into real-world clinical care.
As another participant put it, “My expectations were exceeded – I learned a lot and also felt that my input will impact the project.”
Please Note:
While the detailed meeting report remains confidential to protect participants’ privacy, we are committed to sharing project updates and key learnings as the WISDOM project progresses.
The WISDOM project team is also committed to continuing this co-design journey, with a follow-up consultation planned in 2026 to ensure that patient voices remain at the heart of innovation.
More Information
For updates on the WISDOM project, visit https://wisdomhorizon.eu/ .
More information about MSCAB: https://emsp.org/projects/ms-cab/.
This project has received funding from the European Union’s Horizon Europe Research and Innovation Actions under grant no. 101137154 (WISDOM).
