Meaningful Patient Engagement in Research: Lessons From Retinoblastoma.

Abstract

* Abbreviations: CIHR — : Canadian Institutes of Health Research CRRAB — : Canadian Retinoblastoma Research Advisory Board SPOR — : Strategy for Patient-Oriented Research At only 20 months old, I was diagnosed with bilateral, heritable retinoblastoma: an aggressive childhood eye cancer. The news was unexpected, because I was the first person in my family to be diagnosed with this cancer. With approximately 8000 new cases around the world each year and just 24 new cases annually in Canada,1 it is unsurprising that my family had never heard about retinoblastoma. My right eye was surgically removed (enucleated), and I received chemotherapy and cryotherapy over the course of about 1 year. That was when my family heard the good news: the treatment succeeded in saving my left eye with good vision. Growing up in Ontario, I received exceptional care and returned to the eye clinic and oncology clinic at The Hospital for Sick Children for annual appointments. However, as young adulthood emerged, I felt disheartened and overwhelmed in trying to understand the complexities behind retinoblastoma as a rare, heritable cancer. I had assumed it to be a childhood cancer that was behind me. I instead learned of the lifelong implications ahead of me: I could pass on a disease-causing gene to my future children and I carry a higher risk of developing second cancers.2 Through oncology appointments, genetic counseling, and my own research, I was able to gain a rudimentary understanding of retinoblastoma. However, I still felt that I lacked access to new, … Address correspondence to Helen Dimaras, PhD, Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, University of Toronto, 555 University Ave, Toronto, ON M5G 1X8, Canada. E-mail: helen.dimaras{at}sickkids.ca