Session: Patient Involvement – 11:00 – Tuesday 7th July
Maureen Smith, M.Ed., has a long history of collaboration with the healthcare system subsequent to a rare disease diagnosis in childhood. She is the co-chair of Cochrane’s Consumer Executive and is involved in several Cochrane projects. For the past 11 years, Maureen has been a member of the Board of Directors of the Canadian Organization for Rare Disorders (CORD) and is involved with Rare Disease International and the International Rare Disease Research Consortium’s Task Force on Clinical Research Networks. She is an enthusiastic patient partner in a number of research studies, including a co-investigator on two pan-Canadian studies in paediatric rare diseases and a principal investigator in a systematic review of coaching for shared decision making. Maureen co-led the patient engagement strategy for the development of core outcome sets in two rare inherited metabolic diseases and is now working on the implementation phase. Maureen is a member of the COMET Initiative’s People and Patient Participation, Involvement and Engagement (PoPPIE) working group. She is the vice-chair of the Strategy for Patient Oriented Research (SPOR) Ontario SPOR Support Unit. For the past six years, Maureen has been involved in health technology assessment for both drugs and devices as a patient member on two provincial bodies.