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From patient to a patient advisor in research: Vina Mohabir
Summary:
Vina Mohabir shares how her role as a Patient Advisor is part of a movement to transform child health research at SickKids, through patient and family engagement.
Vina Mohabir, a Patient Advisor and Clinical Research Project Coordinator in the iOUCH Lab, began her journey with chronic pain in 2012 when an accident brought her to the SickKids Emergency Department with an injury to her face and eyes.
Adapting to life with migraines and an invisible disability was challenging, Mohabir says. In addition to her physical journey, she often felt invalidated and isolated by the health-care system. “I felt that my voice wasn’t being heard and that it didn’t matter in this larger system.”
Her care team included Dr. Jennifer Stinson, a Nurse Practitioner in the Chronic Pain Program and Senior Scientist in Child Health Evaluative Sciences. Stinson invited Mohabir to join patient advisory groups in the iOUCH Lab, SickKids Pain Centre and SickKids Family Advisory Network to lend her expertise to help design and improve acute, transitional and chronic pain management programs throughout the hospital.
In addition to meeting other youth like her living with chronic pain, Mohabir helped brainstorm ways to improve programming, patient onboarding, knowledge mobilization and community relationship building. As Mohabir continued working with the lab she sought to further improve pain management for other young patients facing similar challenges by helping design iCanCope, an app designed to track and self-manage pain.
Mohabir also shares her patient journey in the Power over Pain Portal developed by the iOUCH Lab to help teenagers with pain, disability and chronic diseases better manage their symptoms. This online stepped-care portal contains evidence-based pain education, self-management resources and a mentorship program. She finds her experiences often resonate with younger kids who have a hard time picturing a life with chronic pain. Mohabir was involved in the co-creation of this portal and supervised an advisory committee of youth across Canada with pain.
“When I tell patients that ‘I was you 10 years ago,’ I can see the hope in their eyes – they can visualize a future where they can have a job and impact the community,” says Mohabir.
Being told that I was an expert on my lived experience and that I could use that to impact research and other patients was incredible – it showed me that my voice as a patient matters.
Nearly 10 years later, Mohabir is now a research coordinator in the iOUCH Lab alongside Stinson. Her work explores using digital health interventions like mobile applications, artificial intelligence and virtual reality (VR) technology to help manage conditions like chronic pain through customizable resources and rehabilitative care for patients and teens. She also shares her story with community health-care professionals through Paediatric Project ECHO and alongside research lead, Dr. Chitra Lalloo, she is helping to evaluate the implementation of the Paediatric Project ECHO.
Mohabir is also a member of the Research Family Advisory Committee (RFAC), which involves the Patient Engagement in Research Subcommittee at SickKids, where she continues to seek new ways to engage patients and families in research. There are many ways patients can get involved, she notes, from creating a research question and developing methods alongside research teams, to helping deliver study findings to other patients and families. A few highlights for Mohabir have been creating viral social media content for iCanCope and spearheading the Pain Centre and iOUCH Lab strategy for community participation and partnership in research.
A particular focus for Mohabir is including and highlighting more diverse perspectives in research.
“People have intersectional experiences, and we must capture the experiences and perspectives of all gender identities, orientations, races and ethnicities in research. As a racialized person, my identity impacts how I interact with the health-care system and therefore the experience of my condition. We can’t look at health phenomena like pain without looking at social determinants of health.”
Patient advisors like Mohabir are essential to improving the quality of child health research by ensuring that research addresses the needs of the people who will ultimately benefit from the science – patients and families.
"SickKids has changed my life, and it will always influence who I am – my goal is to integrate technology in pain management, innovate with patients and families in research, be an advocate for equity, diversity and inclusion, and begin a research program at a hospital like SickKids."
