An initiative jointly led and coordinated by the European Charcot Foundation and the Multiple Sclerosis International Federation, with the Italian MS Society acting as the lead agency for and behalf of the Global MSIF Movement

Our Vision

The PROMS Initiative seeks to change the way healthcare research and delivery is done by incorporating the perspectives, preferences, and experiences of patients into the process. This approach is known as “participatory medicine,” and it puts patients at the center of decision-making, rather than solely relying on the expertise of healthcare providers.

To achieve its vision, the PROMS Initiative recognizes the need for a structured framework for participatory governance and a system for assessing the impact of its efforts. This includes involving patients and other stakeholders in the development and implementation of healthcare research and delivery initiatives, and measuring the outcomes of these initiatives in a meaningful way.

The ultimate goal of the PROMS Initiative is to improve the quality of care and outcomes for patients, by ensuring that their voices are heard and their experiences are taken into account in all aspects of the healthcare system.

What are PROs/PROMs?

A patient-reported outcome (PRO) is a report of a person’s health condition that comes directly from the person, based on his/her own perception. PROs allow an individual to share their lived experience about their health or quality of life.

Examples include how they feel, what symptoms they are experiencing, or what they are able to do.

A patient-reported outcome measure (PROM) is a measure or tool that records and reports health-related data from patients – passively or actively.

In recent years, there has been a shift away from the conventional models of care delivery towards a patient-centered approach. It has been acknowledged that high-quality care necessitates patient information regarding their feelings, their symptomology, and the effects of the care management pathways undertaken.

Thus, the innovative concept of patient generated data rotates around three main dimensions: patients’ views of their health status while living with the disease (PROMs), the perception of their experience under treatment (PREMs) and even value feedback on their interaction with medical devices (PPI).