CHILD-BRIGHT is happy to launch a new consultation service, managed and led by our own network youth!
After two years of advising CHILD-BRIGHT projects on optimizing youth engagement activities, CHILD-BRIGHT’s National Youth Advisory Panel members are today launching a new fee-based consultation service. Using this service, Canadian researchers working on childhood disability research projects not already funded by CHILD-BRIGHT can, like those researchers who are funded by CHILD-BRIGHT, get and integrate the perspectives of youth with brain-based developmental disabilities in their work, as they design and execute their studies.
Hear from youth panel member Gillian Backlin on why seeking and integrating the perspectives of youth when doing research matters, and what consulting via our new service can bring to the table for Canadian researchers working on childhood disability projects.
Hello everyone! My name is Gillian Backlin and I am a member of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). I live in Vancouver, BC and was thrilled to be invited to be the first member representing the West Coast. As a person with a disability who is well-versed in the health care world, I’ve always held an interest in patient involvement and advocacy; my other main interest is writing – for example, I have my own blog. It has always been a dream of mine to be able to combine both passions, so I’m excited to have the opportunity to write to you here and introduce a new NYAP offering that I have been involved in setting up: the CHILD-BRIGHT NYAP consultation service.
In my two years working as a patient advocate in an official capacity (and a lifetime of advocating for my care), I have noticed an evolution in the health care research community. Researchers are discovering the value of listening to and integrating perspectives of youth like me, who are often directly impacted by the research study in question.
In CHILD-BRIGHT’s case, we represent youth with brain-based developmental disabilities. The CHILD-BRIGHT NYAP was created to involve youth who have lived experience with brain-based developmental disabilities in developing research protocols, recruitment strategies and more. The panel, which I joined in January 2020, is composed of six Canadian youth members from all across the country, all of whom have different backgrounds, abilities, education, and skills. Our only similarity, aside from all having brain-based developmental disabilities, is our shared passion for youth involvement in research!
We are committed to having the voices and perspectives of youth at the forefront of research that is meant for us. It is with this goal in mind that the NYAP is proud to introduce our consultation service. The consultation service is offered for a fee to provide advice to Canadian researchers working on childhood disability research projects who are not already funded by CHILD-BRIGHT.
In my books, this is a win-win for the youth members of NYAP and researchers alike. On our end, we have the opportunity to potentially shape research that could impact others living with brain-based development disabilities. Meanwhile, childhood disability researchers will have the opportunity to consult with youth with disabilities who are currently involved in patient-oriented research as patient-partners or committee members.
Given the diversity of the panel (you can learn more about my colleagues on the panel by reading their member profiles here), researchers can connect with those who can offer the most valuable information to their study. NYAP committee members can be consulted throughout different stages of research projects, from problem definition and study design, to recruitment strategies, survey and interview guide design, data analysis, and more.
By consulting youth members who represent those targeted through their research, researchers will have the ability to better confirm the validity of their research priorities and test whether the study or project in question is responding to the needs of youth with brain-based developmental disabilities.
Because panel members are located in four different provinces, we also offer perspectives that have been shaped by the health care system in our own areas of residence, and we can incisively comment on the different experiences of moving through these systems. As a result, input from NYAP members offers many potential benefits for a research project involving youth with brain-based developmental disabilities.
I can’t wait to see what consultation requests we receive, and what impact the service will have on research projects in Canada! Apply now to team up with the NYAP on your next research project. We look forward to working with you!