The PROMS Initiative gathered once again for its annual Plenary Event in Baveno (IT) on Wednesday 8th of November, as a side event of the 31st European Charcot Foundation annual meeting.
The event was first and foremost a great opportunity to confirm the need of a renewed concept of value that needs to be applied from clinical research to care, one that provides content of validity through a humanistic process that makes the experiential knowledge of people living the disease scientifically meaningful for all the stakeholders. MULTI-ACT ECT is vital to achieve a representative patients’ engagement.
Key-take home messages of the event:
- Redefine the state-of-the-art of PRO measures, seeking their added value in the identification of unrecognized progression, focusing on effective passive measurements and changes over time;
- Deepen the knowledge of functional domain interdependencies to understand the specific combination of measures to be used;
- Carry out analysis of PROMs currently collected into registries and databases, as this can assist in the selection of PROMs relevant to the different phases of MS journey;
- Current clinical research and care measurements today are mostly snapshots of function that fail to capture the subtle nuances of insidious progression. Thus, new challenges need to be faced considering avoiding errors in clinical trials, using new methods for quantifying treatment effects, developing useful synergies with other initiatives and securing collaboration from all stakeholders to implement change;
- Digital measurements can assist data collection processes through passive measurements and detection of changes over time. Yet, patient engagement remains pivotal for optimizing acceptability and users’ trust, for which robust privacy- and security-preserving systems are needed;
- Respond with a sense of urgency to PwMS expectations through adequate testing of most promising PROs and PRO measures.
To date, the most important achievements of the PROMs initiative include:
– An innovative survey designed by and for PwMS (2300+ contributions);
– The in-depth study of up to 4 suitable PRO measures;
– A living library of e-health tools for MS monitoring;
– A dedicated stakeholder meeting to pursue PROMs’ consideration in health policy making which will take place at end of November 2023.
However, we also understood that it is time to further elaborate on strategic oversight. The PROMS Initiative is already working hard to translate all inputs into a tangible action plan leading us closer to our ambition of redefining the state-of-the-art of PROMs implementation for MS treatment.
Departing from the strong benchmarking exercise carried out in Baveno, the PROMS initiative will continue its mission via its multistakeholder participatory governance.