The Canadian Institutes of Health Research (CIHR) is similar to the National Institutes for Health (NIH) in the United States, in that it provides funding for research. CIHR research grants funnel taxpayer funds to researchers, in order to benefit the health of all Canadians.
This year, they’ve decided to solicit feedback – and engagement – through a Let’s Talk campaign. During this campaign, which will close at the end of this month, they “look forward to working collaboratively with you on this important undertaking”.(1)
As a federally funded agency, the Canadian Institutes of Health Research (CIHR) believes strongly in the importance of engaging Canadians.
The input we receive through these engagements is invaluable in guiding our discussions and informing our decision-making process.
Please join the conversation!”(1)
In order to provide comments on any of the CIHR’s pre-set questions, an individual must first register on their website as a concerned individual. This led to some soul-searching on my part; largely due to the 225-character limit to describe myself and my interest in the CIHR!
Was I going to respond to the CIHR’s research questions based on my 20+ years of experience in bioethics, specializing in clinical/medical research ethics? Or was I going to reply based on my much more recent experiences as a rare disease and chronic pain patient?
This is what I finally came up with: “Recent (2016) rare disease & chronic pain patient, with a background in; research ethics (managed a REB), patient privacy (CIPP/C designation), epidemiology (research coordinator during Masters in Bioethics), corporate (healthcare) grants & donations, etc.”
I’d have liked to include my Patient Partner roles, my patient advocacy, and disease awareness activities. But 225 characters isn’t much space at all! Perhaps most importantly, I’d have liked to point out that I wrote my Masters’ thesis on the CIHR:
Does viewing Canadian taxpayers (rather than researchers) as the primary stakeholders of CIHR funds have ethical implications for the oversight of granted research funds?”(2)
This is why I believe it’s so important for non-researchers, people not requesting CIHR funds, to participate in this type of public consultation:
“Why are we engaging Canadians?
Health is a vitally important issue to all of us. In fact, as Canadians, we consistently rank health and health care among our top priorities. Canada’s health researchers are among the country’s greatest assets and they play an integral role in improving the lives of patients and families across the country”(1)
I don’t plan to post any of my replies to their specific questions here, but I may well write about some of the highlights ‘-)
“The Canadian Institutes of Health Research (CIHR) believes this is the right time to develop a national dialogue on the future of health research in Canada. We are seeking your experience and expertise as we work towards a new Strategic Plan in the summer of 2020.
Please join us in this collective effort to define a vision for Canada’s health research funding ecosystem – a vision that would allow us to create a healthier future for Canadians”(1)
If you’d like to join in, click on the first link – below!
References:
(1) Canadian Institutes of Health Research (CIHR). Let’s Talk CIHR. Government of Canada. Online. 12 Apr 2019. Accessed 05 May 2019. Web:
https://letstalk-cihr.ca/about
(2) Woods, Sandra. Does viewing Canadian taxpayers as the primary stakeholders of CIHR (Canadian Institutes of Health) funds have ethical implications for the oversight of granted research funds? Thesis; Masters’ of Bioethics. Monash University, Melbourne. Accepted, with Distinction, 13 Apr 2006. [Available for consultation within Monash University Library; not online at this time.] Monash University Bioethics Library information:
https://guides.lib.monash.edu/bioethics