Working with our PIUO project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Deena Hassan worked on a sub-study that aims to describe the characteristics of children with neurological impairment with neuroirritability requiring hospitalization and the clinical care they receive.
Here’s what Deena had to say about the summer student experience:
“I had no knowledge about patient-oriented research prior to this studentship, so I’m grateful to have had the opportunity to learn. Over the summer, I evaluated the clinical care received by children with severe neurological impairment (SNI) who were admitted to the Complex Care Program at SickKids with suspected pain or neuroirritability. Although pain is the most common symptom reported by caregivers of children with SNI, it is difficult to identify and treat in this population since their signals of distress are often ambiguous and hard to decode. My role over the summer involved reviewing medical charts to better understand how these children were managed, and what investigations were done to determine a potential cause for the pain and irritability. Accessible knowledge translation was one of the main concepts of patient-oriented research I learned over the summer, which will be helpful when writing manuscripts.
Through engaging webinars, group activities, and discussion posts, I learned the benefits and importance of involving patients as partners in research studies. It is vital that researchers involve caregivers and/or patients in outlining concerns, goals, and outcomes that are most important to them. Doing so ensures the research in question will be more meaningful and impactful for the target population. Additionally, patients bring a unique perspective that researchers often lack. Creating a positive and welcoming environment where patients and researchers collaborate can empower patients to contribute their thoughts and perspectives.
These are some of the gems from this summer’s program that I will apply in my future research endeavours. I have a non-profit that focuses on the intersection of low-income families and metabolic syndrome, with an emphasis on type two diabetes. I want to create a focus group of individuals affected by this problem, so they could outline goals, concerns, and outcomes they wish to see (and be involved in) for future research studies. I hope that one day we could collaborate with the Banting and Best Diabetes Centre research council at the University of Toronto!”