Alberta health research, including patient voices, gets financial boost

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The next phase of an initiative to include Alberta patient voices in medical research begins with $21 million in support.

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The Alberta Strategy for Patient-Oriented Research (SPOR) support unit has been operating for several years now, giving patients the chance to participate in research that ultimately illuminates how workers of health treat them and others with their diagnosis.

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They are now embarking on the next five years of operation with funding from Alberta Innovates, the University Hospital Foundation and the federal government through the Canadian Institutes of Health Research (CIHR).

Speaking at a launch event on the University of Alberta campus on Wednesday, Catherine de Beaudrap said her contribution to mental health research as a patient with lived experience has changed her ability to get the help she needed.

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She started having symptoms of depression as a teenager and struggled to navigate the healthcare system and get proper care well into adulthood.

« The biggest problem with mental health, in my experience, is that it takes away your voice, » she said.

« It’s very difficult when you’re in a mental health crisis and you’re sitting across from a doctor in a lab coat talking to you, trying to be able to explain to them where you’re at…After about 15 years of interacting with medical personnel, it was extremely intimidating for me to be able to ask for help.

She began working with a patient-focused research group a few years ago and has since helped plan and collect data for an Alberta-wide survey of people with depression, including ensuring that the work corresponds to the needs of the patients. A list of patient-centered priorities emerged from the work, and is now available to researchers.

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« No matter how well-equipped a medical professional is, they’re not going to know what’s going on inside me better than I do, » de Beaudrap said.

Alberta Innovates vice president of health, Tim Murphy, said the goal is for patients to help make the health system more efficient. They’ve already managed to circumvent bureaucratic processes, so health researchers are only waiting weeks, instead of potentially years, for data.

The hope is to end the long period that can elapse between research results and real change in the healthcare system, with patient experiences at the forefront.

« It puts the patient’s voice on an equal footing with clinicians and researchers, » Murphy said.

Alberta SPOR Support Unit executive director Kelli Buckreus said she couldn’t help but think of her 27-year-old nephew, who died of cardiac arrest due to complications from a eating disorder.

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« He had struggled for years to get a diagnosis and access to gender-appropriate care and to just find care providers who understood the complex ways in which eating disorders affect men, » she said. declared.

“If only the limited research evidence that exists had faster and more effective adoption in Alberta’s healthcare system.

She said the unit’s work aims to bridge the gap between research and healthcare decisions, with tangible impact on patient experiences.

« Having more evidence available at the fingertips of (health workers)…it will make a huge difference in the responsiveness, the effectiveness with which they provide care. »

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@meksmith