Working with our READYorNot project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Claire Dawe-McCord conducted a review to identify key issues and policies that need to be improved relative to the health care transition of youth from the pediatric to adult care settings. She also worked with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She took on a leadership role within this group, co-facilitating meetings, preparing materials, consolidating discussion questions, and incorporating feedback from the PFAC into the team’s work.
Here’s what Claire had to say about the summer student experience:
“The CHILD-BRIGHT Summer Studentship taught me many things. As someone who has previously worked as a youth patient-partner, I have experienced many different kinds of patient engagement, including patient and family engagement in research, but I had yet to be on the other side of the equation. This summer I came to appreciate just how much work goes into creating meaningful engagement. I have come to realize how easy it is, even for researchers with the right intentions, to quickly slip back into the habit of consulting with patients instead of truly engaging.
This summer, I learned that to have “good” patient engagement in research, it is vital to keep open lines of communication between the research team and the patients, families, and caregivers involved. With proper communication, you can ensure that research priorities are set together and that everyone at the table is clear about what is expected of them, whose voice they are representing, and how they should engage with each other moving forwards. I also realized how engagement and partnership cannot be a last-minute thought; it has to be at the heart of your planning from the very first day.
As someone who is hoping to pursue a career in medicine and will likely have to do much more research throughout my life, I am hoping to incorporate my learnings into the care I provide, the research I conduct, and the way that I interact with others.”