Video Transcript – Citizen Engagement Strategy Workshop

Patients no longer want to be on the side line when it comes to their own
health care.

CIHR asked citizen engagement experts how they envisioned the role of Canadians in health research.

Jo-Ann Fellows, Past President, Third Age Centre, Saint Thomas University, NB:

We are in the midst of a revolution, and how health care is being delivered, and how people are being affected by it.

Sholom Glouberman, President, Patient’s Association of Canada, Toronto ON:

The health care system we have was started in 1880 to deal with acute infectious diseases, and what we have to deal with now is long-term chronic conditions. For acute diseases you don’t need very much citizen involvement. For chronic conditions you really do need people to be involved, at every level.

Past experiences have shown involving citizens and patients in research can help make care better.

Sholom Glouberman:

Well, citizens and patients have a different perspective. Vivek Goel, who is the head of public health in Ontario, told me that for a while, they had women who were breast cancer survivors sitting on breast cancer research screening. And they discovered that the research changed its nature, just by them being there.

Vincent Dumez, Director, Bureau facultaire de l’expertise patient partenaire, Université de Montréal:

It is essential, because patients bring a dimension to the application of research that in some ways only they can provide.

Currently, 50% of patients do not get treatments of proven effectiveness.

Changing this statistic can only be achieved by researchers, health care
providers, citizens and patients working hand in hand.

Bonnie Leadbeater, Professor of Psychology, University of Victoria:

Well, I think it’s terribly important to pull people in, have them not only just consult, but work together, with you to create the kinds of things that could make a difference.

Allan Stordy, President of the Canadian Skin Patient Alliance, Calgary AB:

If we don’t have citizen involvement in health care there’s a disconnect and we need that connection to health care because it’s so important for our country to have informed citizens, to have healthy citizens, to have productive citizens, so we can compete.

Through concerted efforts, CIHR is leading the development of a strategy to ensure citizens and patients are increasingly at the centre of health research activities.

Boards and committees / Priority setting / Researchers' work/ Dissemination of research results

Lynn Cooper, President, Canadian Pain Coalition:

Canadian citizens should be involved and so as a citizen, that’s a person who lives with a health problem, or a health care provider, or a researcher. And so I feel that all of these citizens being brought together is going to make for more, well informed, more directed, and better all-around research that’s going to help Canadians.

For more information about CIHR citizen engagement activities or resources.

Thanks to all the citizen engagement experts who participated in the production of this video.

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