Involvement of citizens in research can help steer science in ways that help society and make science communication and science-based public policy more responsive to public needs. Naturally, this also increases public trust in science.
The "Patient Expert" model of health care, in which patients participating in studies or treatments assume a good amount of responsibility for their own care and contribute feedback that can influence the course of future studies is an excellent example of this.
CHILD-BRIGHT, headquartered in Montreal, networks health practitioners, patients, families, and research scientists across Canada to advance patient-oriented care of children with brain-based developmental disabilities. This network was born out of consultation with patients and their families. The CHILD_BRIGHT website clearly outlines the importance of citizen engagement to the network’s projects:
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.
CHILD-BRIGHT holds summer camps for children at research centres in Calgary, Edmonton, and Toronto under the SPORT (Stimulation for Perinatal Stroke Optimizing Recovery Trajectory) program. Children in the camp receive trial treatments aimed at improving their motor function, as well as undergoing testing and imaging for research. Their participation helps to build data sets for studies, and guides the direction of future research. Of course, some fun is involved as well! Many of the children have reported improved function through the camp's treatments.