Reflecting on our experience of partnering in research: Youth and trainee perspectives.
By Brian Xiao, Danielle DuPlessis, Josh Shore
As research trainees in the Neurorehab Outcomes via Education & Learning (NOvEL) lab within the Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital in Toronto, we have had the great pleasure of working alongside an exceptional high school student named Brian Xiao over the past 2 years. In September 2023, within his very first week of grade 9, Brian contacted our group regarding research opportunities. Since then, he has worked closely with our team as a research volunteer and youth advisor, helping to infuse a valuable youth perspective in our work. Throughout our interactions, Brian continues to impress us with his maturity, initiative, and creativity.
We are thrilled to support this blog post, led by Brian himself, in which we jointly reflect on our experiences working together on the R2Play project. R2Play is an interdisciplinary initiative between the NOvEL lab (led by Dr. Shannon Scratch) and the PEARL lab (led by Dr. Elaine Biddiss) at Holland Bloorview to develop a multi-domain simulated sport assessment tool to support return-to-play decision making among youth following concussion. The article primarily presents Brian’s perspective, alongside our brief commentary and reflections. We hope this piece is useful for other youth and trainees who wish to partner in research.
- Josh Shore, MSc & Danielle DuPlessis, MA, MSc
PhD Students at Holland Bloorview Kids Rehabilitation Hospital
Brian:
Nowadays, it may seem like research opportunities are incredibly rare and hard to come by. I myself had that perspective when I first started looking. Even after being accepted to volunteer and work with a lab, youth might feel stressed or anxious about how they will perform. In this post, I will describe my experience obtaining this opportunity and working with the research team, sharing some things I learned along the way.
Finding and securing opportunities for youth engagement in research
Let's start with some background about myself. I am currently a grade 10 student who loves hockey and plays a lot of the sport. Many of my teammates and coaches have gotten concussions and some of them were unfortunately career ending. I am also really interested in neuroscience and everything related to the brain, so I felt that research related to concussions would be extremely relevant for me. That’s when I reached out to Dr. Scratch and her wonderful team in the NOvEL Lab at Holland Bloorview, who lead important research on concussion in youth!
Within my school and community, there were people I knew and looked up to who were able to get into strong pre-med programs, and I was inspired to try my best as well. A piece of advice that they gave was that sending cold emails, however small the chance of getting a reply, is one of the most important aspects of getting opportunities. From my experience, some tips on increasing your chances of a reply are:
Reach out to labs whose work interests you. As a hockey player and a keen neuroscience student, working on the R2Play project in the NOvEL lab was a great fit for me personally and academically.
Demonstrate your interest to the research team by familiarizing yourself with their work. Reading papers they have published and looking at their lab website or social media page is a great way to do this!
Show your connection to their work by making observations that relate to your own life. In my case, I wrote about my experience and observations related to concussions in sports.
Highlight your skills and personality in the email to show off your true self! It doesn’t have to be perfect, it just has to be genuine.
Be prepared to make a back-up plan, and connect with other research groups that match your interests if you don’t hear back.
Getting rejected is common and most of the time, it comes down to luck and timing. Maybe the lab you are interested in just took on new students, or they just don’t need volunteers right now. This is not a bad thing as perhaps next month, or a few months later, they may need help and consider the people who emailed them and showed genuine interest.
Josh and Danielle: We were blown away by Brian’s initial email. True to his advice above, we could tell from his thoughtful message that he had done his homework on our lab’s work. He showed confidence in sharing his own experience of concussions and offered insightful observations that aligned well with current research evidence. It was clear that he had a genuine interest and personal connection to our work. His email was well-written and showcased that Brian was able to communicate clearly and professionally. These attributes instantly caught our attention and convinced us that he would be a great member of our team.
Contributing to research through youth engagement
Brian:
I am extremely lucky to have a role in the NOvEL Lab. The team members are some of the smartest and nicest people I know. In my time with them, I have mainly worked on the return-to-play project, or R2Play for short. R2Play is a system designed to help test whether an athlete is ready to return to sports after a concussion. It combines movement and thinking skills to simulate real game-like situations.
Some things I have been doing for the R2Play project include:
Testing and providing feedback on the R2Play system and study procedures
Refining the study interview guide to be more engaging for youth
Co-creating a family facing introduction video of R2Play (see below)
Updating an existing demo video to describe R2Play for academic purposes
Attending community events to promote R2Play
Co-presenting about the R2Play project at an academic conference
Participating in formal meetings and discussions with the research team about the needs of youth returning to sport after concussion
Collaborating on a research grant application to form a larger youth advisory council that integrates more youth perspectives
Our team is currently working on adapting R2Play as a rehabilitation tool (R2Play-Rehab), in addition to a test of whether athletes are ready to return to play. To do this, we formed a larger youth advisory council, and I’ve really enjoyed working alongside other youth advisors. R2Play-Rehab will hopefully be launching soon!
Family facing introduction video for R2Play study co-created by Brian and the research team.
Josh and Danielle: The contributions we’ve received from Brian have been instrumental to help shape the R2Play project into what it is today. For example, the family-facing introduction video that Brian created with us has been so helpful to communicate clearly with youth and families about R2Play and what our research involves. We’re so thrilled to see the leadership role that he’s taken in forming a larger youth advisory council for R2Play-Rehab and securing funding to support its work.
We want to stress the importance of carving out a meaningful role for research partners. As in any relationship, the most important first step is getting to know each other. You can begin by discussing interests and collaboratively setting goals with the folks you are engaging to understand what they want to take away from the experience. Having a partnership that feels formal, balanced, and mutually beneficial is key!
Personal and professional growth through engagement in research
Brian:
Overall, the process has been extremely fun and helped me learn news things about concussions and the research process in general. For example, I learned about how and why concussions occur and how they are treated. I also learned about the design process and how research and design practices can work together in an academic setting.
This experience has really reinforced my interest to work in the neuroscience field. It is amazing to contribute to work that aims to help youth recover from brain injuries, and I am extremely proud and excited of the fact that I am able to continue working with the lab!
Working with the NOvEL Lab has taught me so much over the past couple of years, both specific skills required when working in a professional lab setting and general skills that I will be able to apply to anything I want to do in the future. For example, I learned how to prepare a research presentation and gained valuable experience working collaboratively within a large team.
These are just some of my insights from working with the R2Play research team so far. I urge others who are interested in science and healthcare to look for similar opportunities and experience research engagement for themselves! Involvement with the NOvEL lab has really increased my interest in all things related to neuroscience and I really love being able to interact and talk with the team about anything in that field. This is also a great starting point for my goals of eventually becoming a neurosurgeon (big dreams haha)!
Josh and Danielle: We speak for our whole team in the NOvEL lab when we say that we can’t wait to see what Brian does next! We know that he has such a bright future ahead of him. We are so fortunate to have him on our project team, providing a valuable youth lens to work that we hope will ultimately support safe and evidence-based care for all youth. We strongly encourage other trainees to seek opportunities for youth engagement in their work and experience the impact it will have on their research!