The PROMS Engagement Coordination Team (ECT) is a group of 7 people who are affected by MS, plus representatives from MS organisations. We define ‘people affected by MS’ as individuals who either have MS or care for an individual with MS. As experts of MS through lived experience, the ECT plays a crucial role in making sure that the voices of those affected by MS, including patients, their families, and caregivers, are heard across all parts of the PROMS initiative.
Members of the ECT work closely with other teams in the PROMS initiative to figure out where involving people with MS will bring the greatest benefit to the various projects, who needs to be involved and how to involve them.