Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.
In this post, Gillian Backlin, National Youth Advisory Panel member, shares her “why”.
I’m new to patient-oriented research. In fact, I just got involved through CHILD-BRIGHT’s National Youth Advisory Panel. What drew me to CHILD-BRIGHT was the opportunity to do something positive for a community that I feel so strongly connected to through my own experience as someone with a brain-based disability. Advocating has always been a passion of mine and I felt that this was an incredible chance to not only be heard but to make a positive impact. CHILD-BRIGHT really helped me see the value in my perspective and gain more confidence as an advocate, not only for others, but for myself. I think having access to firsthand experiences is valuable for both the patient and the researcher, because it adds a much-needed personal element to research and empowers the patient to value their thoughts, opinions and experiences. I’m so grateful for the opportunity to be a part of patient-oriented research at CHILD-BRIGHT.