Youth have Say in Mental Health Research

A recent Australian media report describes an “innovative approach to mental health research”

This is a website where young people who have received mental health care can rate what they think was helpful to them. Good idea, but hardly new.

Our group in Toronto published an academic study on this question in the 1990’s in the Canadian Journal of Psychiatry. And, last year, the Institute for Families published its report of a national consultation involving youth, parents and researchers from across Canada in which the issue of what should be mental health research priorities in our country. This report was the outcome of shared consultations that may help identify national child and youth mental health research priorities for our national and provincial health granting councils.

Regardless of pride of place with the idea – it’s essential that young people and their families be involved in the identification of what should be researched. Those who provide clinical care and those who do research can only do what they do best when they are informed by those they work with – patients. I can still remember when one of my patients, a young girl with a manic episode told me that the mood rating scale I had given her to fill out made no sense – because it did not have a place to mark down depressed or low mood. When I changed the scale with her help we made the discovery that manic episodes in young people fluctuated widely in their mood levels. And when we applied this new measurement technique to scores of other young people we were able to describe for the first time, the now understood to be “classic” description of mania in teenagers: mixed rapid cyclic manic episodes. And that is only one example.

So what does this tell us? What good health providers have known for centuries. listen to your patients. Involve them respectfully as full partners in their care. Learn from them.

--Stan