Individuals battling depression help direct research
Collaborative team comes up with 11 priorities for study that can do most good
A team of clinicians, researchers and those who have experienced depression released 11 questions they hope will help focus studies on creating better outcomes for sufferers.
“The biggest thing with depression that isn’t often talked about is it steals a person’s voice,” said Catherine deBeaudrap, who volunteered to share her experience of depression as a member on the steering committee that informed the Alberta Depression Research Priority Setting Project. “When someone is depressed, it is very hard for them to advocate for themselves and we become dependent on the system to look after us.
“It has given someone like myself, who has lived with depression, a chance to get their voice back and impact the system.”
Clinical psychologist Lorraine Breault, professor emeritus in the faculty of medicine in psychiatry at the University of Alberta, led the project and said when research into complex conditions such as depression does not include input from those with lived experience, studies can be “missing so much in the interpretation.”
“Research and researchers tend to be really isolated in academia. We tend to come up with research questions that are of interest to us,” Breault said. “People with lived experiences would add very different nuances to these questions.”
The project, put forward by the Alberta Strategy for Patient-Oriented Research Support Unit and the Canadian Depression Research and Intervention Network, collected survey responses from 445 Albertans to identify what they felt should be priorities for depression research.
From that data, collected over a six-month period, they identified 900 questions the public would like to see answered.
From those, the committee boiled it down to 11 research priorities they hope will encourage collaboration among diverse researchers, clinicians and those living with depression and focus research efforts into areas that could have the greatest impact.
What surprised Breault was the depth people were willing to go into when responding to the survey, eager to share details of their history with depression and treatment, and how those living with depression expressed a desire to
be partners in their own care.
“What they are looking for is, what can they do, how can they take control of their own treatment? That was a nuance that was missing when researchers looked at a question versus people with lived experience,” Breault said.
One barrier to this complex and collaborative research, Breault said, is the way research is evaluated and funded, often forced into
narrow focus to satisfy the needs of publications and grants.
“We would have to change how we evaluate faculty members, researchers,” Breault said. “Rather than just counting publications, we need to count … how have you been collaborating with others to create new ideas, new methodologies, new research questions.”