Digital “Science of PwMS input” in the era of personalized medicine

Summary: This video explores the 2024 Plenary Event of the Global PROMS Initiative, a key movement in personalized medicine. This year’s focus is on how digital health technologies can boost the science of patient input. Co-Chairs Giancarlo Comi and Peer Baneke opened the event, noting that digital technology has always been central to the PROMS agenda.

ECT Co-Chair Helga Weiland highlighted that people with MS (PwMS) have high expectations for digital technologies. These technologies can increase their engagement in research and healthcare decisions, improve symptom monitoring, and facilitate wider participation in clinical trials.

SSC Co-Chairs Paola Zaratin and Patrick Vermersch outlined key challenges:

• The functional domains targeted are often not the most relevant to PwMS.

• Many tools still capture snapshots of patient status, not measuring health outcomes over time.

• There is a clear need for regulatory guidance.

• Focus is needed on using PROMs to trigger truly personalized medicine approaches.

Frédéric Destrebecq opened the event with a keynote speech on the importance of initiatives like PROMs to improve research and care based on actual patient experiences. He also highlighted projects such as MULTI-ACT and BRAINTEASER that aim to engage patients and integrate different data sources.

Giampaolo Brichetto and Ainhoa Ruiz del Agua discussed the findings of a survey of over 5,000 MS patients, highlighting the variability of symptoms across age ranges, particularly mood issues being more prevalent in younger ages.

Angela White discussed the readiness of patients to use digital tools, recommending the development of passive monitoring tools that allow PwMS to live their lives as well as possible. She also stressed the need to collect data related to all life dimensions, and to use artificial intelligence to understand correlations between various factors of the disease. The ultimate goal is to effectively use PROMs data for truly personalized care. The 2024 Plenary Event is a significant step toward this goal.

Robert McBurney  – WG2 Co-Leader

Chief Research Officer of Accelerated Cure Project for Multiple Sclerosis (APC), a national non-profit organization dedicated to accelerating efforts toward a cure for MS by rapidly advancing research that determines its causes and mechanisms, is one of the co-leaders of the Clinical Management Working Group (WG2) of PROMS Initiative.

Usman Khan – WG4 Co-Leader

Professor at Katholieke Universiteit Leuven and co-chair of PROMS Initiative Working Group 4. This group focuses on how PROMS can be integrated into policy-making processes, which is a relatively new space. Usman’s role is to understand stakeholder groups’ understanding of PROMS and to connect that to determine their interest in using PROMS for policymaking processes

Ainhoa Ruiz Del Agua – ECT member

The patient plays a key, central, and constructive role within the PROMS Initiative. This was one of the most significant passages of the speech by Ainhoa Ruiz Del Agua, a member of the Engagement Coordination Team (ECT), who described, during the conference promoted by the Eugenia Epalza Fundazioa (Esclerosis Multiple Euskadi) within the framework of the #WorldMSDay last 30th May, her first-hand experience and the next steps in the field.