Last week I was a guest participant in the CDRIN (Canadian Depression Research and Intervention Network) Training Program held in Calgary, Canada. The training was hosted by Mood Disorders of Canada with Dr. Barbara Everett as our instructor. The event marks a turning point in how depression and other mood disorders are treated by researchers.
Until now researchers haven’t used people with lived experience as equal partners in their projects to solve mental illness. Most of the time a researcher comes up with a solution, tests it on laboratory animals, and then does human case studies. It’s like having your doctor prescribe pills without ever seeing you in person or not asking if you’re allergic to certain medications.
“In Britain it is law that patients or the public be involved in equal proportions to the number of researchers on any project. This ensures that patients and the public have ample opportunity to contribute to all aspects of the organization. Australia has a very well written comprehensive policy but it leaves it up to the individual researcher whether or not to follow the policy.
The U.S. Patient Centred Outcomes Research Institute (PCORI) was formed in 2010 as part of the Patient Protection and Affordable Care Act. PCORI funds a variety of patient-outcome research projects but has a particular commitment to involving patients in setting priorities. It prides itself on producing research that is transparent right from the outset. PCORI also has a well-defined process for obtaining patient and carer advice.” (Dr. Barbara Everett, CDRIN Training Guide)
CDRIN’s goal is to incorporate people who have experienced mental illness with researchers as equals in research projects. CDRIN wants people with lived experience to learn the basics of research and to be able to work with research teams in developing cures and finding solutions to mental health problems. That means people who live with any type of mental illness/disorder such as depression, PTSD, bipolar, autism, anxiety disorder, or suicide (just to name a few) can work as equal partners with researchers on projects. The goal is to find real cures or preventions and put a dent in such issues as suicide. In the past 20 years, no research has been done on suicide prevention!
Lived experience brings to the table valuable information, ideas, and perspectives that researchers often don’t see or think about because of the specific focus of their project. We who suffer from these issues can now advise and facilitate new approaches to techniques that may simply be repeats of past experiments. We don’t need twenty more repeats of something that’s been proven fifty times already! Let’s actually research suicide prevention with goals in mind and not just rehash the effects of antidepressant pills.
I’m looking forward to being a partner with researchers!
CDRIN was launched in 2013 and has five research hubs across Canada. For more information about CDRIN please visit http://cdrin.org