Making patients partners

“Why do we have a Patient Advisory Board [for the Movement Disorders Clinic] at Toronto Western Hospital?” asks Hugh Johnston in his opening remarks of the spring edition of the Movement Disorders Speaker Series. “These are the world leaders in movement disorders – what do they need to know from a bunch of patients and family members?”

Hugh is a retired Chartered Professional Accountant, and is also a patient at the Edmond J. Safra Program in Parkinson’s Disease and the Morton and Gloria Shulman Movement Disorders Clinic at University Health Network (UHN). Since July 2019, he has dedicated his time and effort volunteering as the Chair of the Patient Advisory Board (PAB). After posing this question, he smiles into the camera and dives into the accomplishments and future goals of the PAB alongside co-Chair Soania Mathur (MD) and Gordon Myers, Chair of the Communications Committee. This Speaker Series, held on Wednesday, April 14, 2021, coincides with Parkinson’s Awareness Month, and was streamed online to 80 attendees from the comfort and safety of their own homes.

Throughout the event, the three board members shared their personal experiences living with Parkinson’s disease, their roles within the PAB, and answered questions in a moderated Q&A. The PAB was founded by Dr. Sarah Lidstone, neurologist and director of UHN’s Integrated Movement Disorders Program, Dr. Naomi Visanji, senior researcher at the Krembil Brain Institute and Dr. Anthony Lang . Since its inception, the PAB has represented the lived experience of patients, working in close partnership with faculty and clinicians at the Movement Disorders Clinic. They help neurologists alter the course of treatments and therapies, and co-design integrated care for people with movement disorders.

The PAB’s overall goals are to provide advice to improve the quality of research, communications, and the patient experience within the Clinic, and redefine how healthcare professionals and patients communicate with each other. Despite the challenges of COVID-19, they have celebrated many milestones this year, including the launch of a digital newsletter, a Facebook group for patients, a research recruitment process review and the creation of patient friendly resources. They are in the process of developing an improved Clinic website and have many other projects in store.

Currently, the board is looking for new PAB ambassadors, who will work on clinical innovation, research recruitment and experience, or communications and education. Voices from diverse groups with a range of different movement disorders are needed to engage in important conversations with staff members from the Clinic. If you are a patient and want to get involved, talk to your doctor.

“This is not a patient advisory board that we’ve seen in our experience,” remarks Hugh. “This is unique, and we are so humbly appreciative of the opportunity to provide our input.”

“Staff are so willing to learn,” adds Soania. “That’s what’s so tremendous about this collaboration.”

The next virtual Movement Disorders Speaker Series is scheduled for the fall of 2021. Please contact us to learn more.

This session of the Movement Disorders Speaker Series was made possible through the generosity of Fraser Berrill. 

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