At CHILD-BRIGHT, 'patients' have been at the centre of our work since before our network was even established. 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, 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.
Why do patient-oriented research?
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 patients and families may identify outcomes of importance that are different from those identified by researchers, and also help choose measures well suited to those outcomes
Because we want to improve the quality of the research
Because we aim to increase patient support for 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.
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How can you get engaged?
There are many ways: simple ways that take only a few seconds, or more elaborate ways based on our needs at the moment. Browse our list by clicking below:
But don't forget, this network is about YOU so we also want to hear of other ways that you want to contribute. Do you have any special interests, talents, priorities, or concerns? Would you like to get involved in a different way? Let us know!