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Why more patients are taking a front seat in medical research

After undergoing surgery herself, Gurlie Kidd was so interested in work on a team studying “prehabilitation” for frail patients undergoing surgery, that she got involved.

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Gurlie Kidd was recovering from surgery at The Ottawa Hospital in 2017 when a friend stopped in to see her. That friend was clinical research associate and PhD student Emily Hladkowicz. And the visit not only changed Kidd’s life but has improved the lives of other patients like her.

Kidd was so interested in Hladkowicz’s work on a team studying “prehabilitation” for frail patients undergoing surgery, that she got involved. Prehabilitation is similar to rehab, but done before surgery to improve recovery.

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The retired social worker became a patient partner on the hospital’s AIMS (Aging Innovation in Perioperative Medicine and Surgery) research team, led by Dr. Daniel McIsaac, and is now a team member.

Kidd’s input has helped researchers better understand when and how to ask surgical patients about taking part in studies. The input has reduced the burden on patients. She and other patient partners have helped the team set priorities and adjust study design, including sending regular updates to patients involved, something Kidd reviews to make sure they are relevant and understandable.

“Lived experience matters. It legitimizes some of the things that we have gone through and it acknowledges our expertise,” Kidd said of patient engagement. “I have felt heard. There is a respect for patients and patient input that is kind of amazing.”

Kidd is part of a growing trend to involve patients in research from the very beginning. At The Ottawa Hospital, which is a leader in the field, patient partners are now involved in 70 research projects.

Dean Fergusson, a clinical epidemiologist who founded The Ottawa Hospital’s Office for Patient Engagement in Research Activities, would like to see that number grow.

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“We still have a long way to go. We want to see more and more researchers doing this and I think it will happen.”

Fergusson is scientific lead of the provincial network for patient-oriented research, located throughout the province, including at CHEO and Montfort, as well as TOH.

This week, federal Minister of Health Jean-Yves Duclos was in Ottawa to announce combined federal and provincial funding of $68 million over five years to support ongoing work of patient-engaged research across Ontario.

“To provide Canadians with high-quality health care, we need research evidence to tell us what works,” said Duclos. “Patients, caregivers, and families help get at this evidence by adding their lived experience to the research process.”

Fergusson said the advancement of patient-oriented research made him rethink his own approach to research in the area of transfusion medicine and critical care a decade ago.

“I thought I always was doing patient-oriented research,” he said. “And then it hit me that patients were not even at the table. The team and I were thinking about what was best for patients rather than having the patients there.”

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Now most of his research projects involve patients, which he said helps make the work more relevant.

At The Ottawa Hospital, some 200 patient advisers are providing input at every stage of research, from determining which data should be collected to analyzing results and sharing them with the broader community, all of which maximizes success and impact of the research.

Dr. Dan McIsaac, an anesthesiologist at The Ottawa Hospital who heads the AIMS research team, said patients have been vital in the team’s work.

“As a researcher, I have been trained on how to design research studies so that we can find meaningful answers. At the same time, a meaningful answer for a physician is not the same as a meaningful answer for a patient.”

His team has spent time with patient advisers trying to better understand how they define successful surgery.

“How do we make sure this meets your needs as a patient? That is where we get real value.”

For Kidd, that is an important acknowledgement. “Patients need to be heard and have something to say.”

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