Patient and Public Involvement (PPI) is a method of increasing the chances of a successful health-based research program by involving people with lived experience of a particular condition (e.g. MS) as partners in the research process. COB-MS currently involves a number of PPI processes, such as the inclusion of an ‘embedded patient researcher’; along with a five-person Patient Advisory Panel and two PPI members on our trial steering committee. Notably, our embedded patient researcher, Mr. Robert Joyce, has Secondary Progressive Multiple Sclerosis (as well as other comorbidities) and works as a part-time assistant researcher on COB-MS, contributing his experience of 28 years living with MS – the first person to be employed by NUI Galway in this type of role.
PPI has been consulted throughout the roll-out of COB-MS in an effort to provide detailed answers regarding lived-experience queries. These consultations have been of great importance for developing methodological solution strategies. The feedback garnered from our panel has allowed us to make positive methodological amendments and better understand the needs, motivations and attitudes of our patient participants.