““In 2015, we met with 80 stakeholders in person and polled over 900 patients and families touched by brain-based disabilities. We wanted to hear their priorities, concerns, and learn more about what was important to them. Based on their input, CHILD-BRIGHT was born.””
At CHILD-BRIGHT, 'patients' have been at the centre of our work since before our network was even established in 2016. We understand that patients and families are experts on their health experiences and needs and we look to them to provide us with insightful input that will influence our priorities, research study design, the outcome measures we use, as well as the interpretation and use of our findings.
As a network working under Canada's Strategy for Patient-Oriented Research (SPOR), we aim to engage all people touched by brain-based developmental disabilities, especially patients and families, as meaningfully as possible in all aspects of our work. As part of CHILD-BRIGHT’s Phase 2 funding (read more about this here), we will continue to monitor and enhance citizen partnerships and will assume leadership nationally in promoting patient-oriented research in child health research. The Citizen Engagement Program team will also work closely with the EDI-DI Program to engage citizens (patient-partners and other groups) who are underrepresented in the network. This important work will ensure that the rights of children with disabilities of diverse backgrounds and abilities are respected and met.
Citizens from many fields and backgrounds, including family members and youth with disabilities, come together to collectively shape our work.
Why do patient-oriented research?
Listen to Annette Majnemer describe the benefits of patient engagement
Because it's important to involve people who have first-hand experience with the disability or disease.
Because all parties should be represented fairly and equally.
Because patients and families will often identify research priorities and/or outcomes of importance that are different from those identified by researchers.
Because we want to improve the quality of the research.
Because we aim to increase patient support for research.
Read why some of our members got involved in patient-oriented research
What are the benefits of getting involved for patients and families?
Patients and parents become competent members of the research team, influencing all phases of the project as experts.
Patient and parents can ensure that the research is highly relevant and more likely to be taken up and used to improve health care.
All involved in the research, including patients and families, will have a strong shared sense of purpose, to improve the lives of children with brain-based disabilities and the lives of their families.
Want to get involved? We are recruiting for our Citizen Engagement Council!
Are you a Canadian youth with a brain-based developmental disability? Our National Youth Advisory Panel is recruiting!
Our services
CHILD-BRIGHT LIVED EXPERIENCE CONSULTATION SERVICE
After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed proficiency in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities. To leverage this shared capacity, we launched our CHILD-BRIGHT Lived Experience Consultation Service for researchers external to CHILD-BRIGHT to engage CHILD-BRIGHT members on their own research projects. Learn more about our consultation service, or apply today.
Read about the prior consultations supported by our youth members:
engagement matching tool
We strive to help match community members to ongoing opportunities within our network. View current opportunities here, or submit a general application to be considered for future opportunities.
Our initiatives
We ensure fair compensation for all involved in research
We aim to be leaders in Canada in relation to fair compensation for all involved in research, governance, and other research network activities. Download our compensation guidelines.
WE engage at multiple levels
As part of our mandate under Canada's Strategy for Patient-Oriented Research, we track and demonstrate that we involve community members and youth in all aspects of our research. Learn how we measure engagement.
WE STUDY AND DOCUMENT THE EVOLUTION OF ENGAGEMENT IN OUR NETWORK
We surveyed our members to assess engagement at CHILD-BRIGHT. Read our three-part report looking at how patient engagement has unfolded across our network between 2018 and 2020. Read an article about the results of these measurement efforts or consult a lay summary of the article.
We recognize patient-partner leadership
In 2021, we launched the Frank Gavin Patient Engagement Leadership Award. This award, in honour of our inaugural Director of Citizen Engagement, provides us with an opportunity to recognize leaders in patient engagement in research related to children with brain-based developmental disabilities and their families.
Meet our previous winner:
Our resources
Toolkit for child health research - COMING SOON!
Since 2016, we have developed several resources from lessons learned to enhance patient-oriented research. Soon, these resources will become part of a toolkit to support capacity building for investigators in child health research institutes and centres across Canada. We have also developed tips for patient-partners and researchers involved in patient-oriented research, which you can consult already.
Visit our blog
We want to hear from you!
This network is about YOU so we want to hear from you.