Terezia Farkas. CNN. Huff Post. International Bestselling Author. Writes about dealing with depression.
Okay everyone, I am Tired!! Being depressed and attending a full day training course is really hard work. It takes a lot out of a person like me. But I'm also loving it! Not only because I'm learning lots but the people I'm meeting are wonderful! I can't tell you too much because of privacy issues but trust me when I tell you they are inspirational.
The CDRIN training is led by Dr. Barbara Everett who so far has made the long hours fly by unnoticed with her graceful and humour filled teaching. CDRIN was launched in 2013 and this training is considered to be the first of its kind. CDRIN has five research hubs across Canada that do collaborative research projects involving researchers, clinicians, persons with lived experience, their carers and other stakeholders.
The goal is to equip persons with lived experience and carers (loved ones of depressed people) to learn the basics of research and to be able to work in research teams.
I'll be honest - it's strange calling myself a person with lived experience. I am someone who suffers from depression but depression doesn't define who I am. I don't mind telling people I'm a depression sufferer or survivor. We had an interesting discussion about this term and how words can label people. Until there's a better term for people who suffer from depression that won't upset, alienate or stigmatize people, it seems 'person with lived experience' is the new wording researchers use. But remember, that's only what the scientific world calls us.
CDRIN is trying to incorporate people who have experienced mental illness with researchers as equals in research projects. In Britain it is the 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 will 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 as to whether or not to follow the policy. Some do and some don't.
Canada does not and probably won't have a federal law mandating patient involvement in research. But the Canadian Institutes for Health Research (CIHR) is examining developing policy.
In the U.S. Patient Centered 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.
I'll be continuing this blog tomorrow!
Terezia Farkas. International Bestselling Author, Huffington Post/ CNN contributor, columnist of Depression Help. Focus is mental health. Her bestseller Heart of Love Evolution – Surviving Depression is available on Amazon. Website: www.tereziafarkas.com Follow on Twitter.