Patient Report Outcomes (PROs): patients should not only share their voice but co-create
Patient Reported Outcomes represent a unique opportunity to measure the impact of health research, treatment and care on outcomes that matter most to people with multiple sclerosis (MS). An important driver of this change is enabling science with and of patient input via a multi-stakeholder and multidisciplinary organizational models. Science with patient input occurs when patients meaningfully and actively collaborate in the governance while science of patient input means using data of people with a disease to evaluate the impact of Research and Innovation (R&I).
Patient Reported Outcomes exist but should be improved, standardized and used more than has been done so far, in order to optimize their role in measuring the impact of research and healthcare in patients’ lives. This is the picture of the Patient Reported Outcomes emerging from the review published on Current Opinion in Neurology by Paola Zaratin, Director of Scientific Research of the Italian MS Foundation (FISM) and Giampaolo Brichetto, Coordinator of research in rehabilitation at FISM and Director of AISM Rehabilitation Center in Genova (Italy).
It is crucial to take the opportunity, the authors explain, to reflect and open a discussion on the importance to integrate health status reported by people with MS into research and treatment paths. Even more if this is done from a privileged point of view, they underline: via multi-stakeholder organizational models.