Toronto Western's advisory board brings patient perspectives to the other side of care 

From the beginning the feeling in the room (both real and virtual) was one of confidence, inclusivity and resilience: Confidence gained and learned through experiences, both good and bad, that have shaped and strengthened our lives. Inclusivity from knowing that the answers can come from the most unlikely of places. And resilience. The resilience that allows you to get up and participate meaningfully, everyday, in your or your partner’s life with a movement disorder and still see the humor and love that awaits, if you’re willing to look for it.

The patient voice has never had a more direct and effective conduit to the clinicians at the MDC — and they are listening. They attend our board meetings whenever possible and take part at the committee level. It works. But we can’t and won’t stop there. Looking forward, we have a new committee for patients going through advanced therapies and a new support  group to follow. A new video version of Clinical Research 101 is in development and could be an important step in the delivery of information to the patient community. We are establishing a relationship with the PAB at Bas Bloem’s clinic in the Netherlands that could become a great resource in the search for new ideas and approaches like the active engagement of MDC patients in research.  

Patients working side by side with the clinicians and staff. And so it goes.  

The Movement Disorders Clinic is and will remain a destination for young neurologists looking to complete their fellowship in the study of movement disorders. We hope and believe that the Patient Advisory Board at Toronto Western can play an ever more important role in maintaining the stature of this Movement Disorders Clinic, while helping to improve patient experience bit by bit along the way.  

Patient Advisory Board at Toronto Western Hospital 

· Gordon Myers, Board Chair 

· Hugh Johnston 

· Soania Mathur 

· Ron Prosserman 

· Jeff Ginsburg 

· George Crawford 

· Anne Bada Crema 

· Gerry Smith 

· Missy Mandel 

· Joe Van Koeverden 

· Harry Forestal 

· Aneta Josefowicz-stecher 

· Frank Sgarlata