aSAH survivor and her daughter help advance stroke research

Patient goes from research participant to research partner

October 23, 2019

Debi and JosephineDebi Borbridge [left] and her daughter Josephine Laframboise are working with researchers at The Ottawa Hospital to shape the future of research on aneurysmal subarachnoid hemorrhage (aSAH).When 61-year-old Debi Borbridge had an aSAH, a rare form of stroke, little did she know that two years later she and her daughter would be helping to shape the future of research in this field.

Debi was lucky to be alive after having an aneurysmal subarachnoid hemorrhage (aSAH), a burst artery that bled into the space around her brain. One in three people die, and those who survive often have life-changing disabilities. Like all aSAH patients, Debi’s recovering brain was at risk of further injury from lack of blood flow.

Intensive care physician and associate scientist Dr. Shane English was studying whether using blood transfusions to keep blood levels higher would improve outcomes for aSAH survivors. At the time the made-in-Ottawa pilot trial was running in five hospitals across Canada. Now this major clinical trial is in 15 hospitals across three countries.

During Debi’s treatment for aSAH at The Ottawa Hospital in 2016, her daughter, Josephine, agreed for her mother to participate in this clinical trial.

“We decided to go ahead— there didn’t seem to be any negative sides,” said Josephine. “Anything we could do that could possibly improve her outcomes.”

After five days in a coma in the intensive care unit, Debi began the long process of recovery and rehabilitation.

Six months later, to assess clinical outcomes as part of the study, the research team called Josephine to ask questions about how her mother was doing. Some of their questions didn’t seem to make sense to Josephine, given how early Debi was in her recovery process.

Josephine reached out to Dr. English to express her concerns.

When he heard Josephine’s feedback, Dr. English realized that there was a disconnect between what information aSAH researchers were trying to collect and the reality that Debi and Josephine were living. This is likely in part because the outcome measures used in aSAH research were tailored to people who had had other kinds of strokes. They weren’t necessarily a good match for aSAH patients, who have dramatically different injuries and often a different path to recovery.Debi and Josephine were key partners in organizing an inter-disciplinary event at the International Subarachnoid Hemorrhage Conference in Amsterdam in June 2019.

“That conversation with Josephine drove home the fact that the measurements we use may not reflect what’s important for patients and families, and how important it is for patients and families to be involved in defining those outcomes,” said Dr. English. “I’m so grateful for that discussion, and it’s stuck with me ever since.”

When Dr. English’s team reviewed the scientific literature to see what kinds of questions aSAH researchers were asking patients, they found that very few of these questions had been informed by people with lived experience. This further inspired Dr. English to work with patients and their families to establish outcome measures specifically for aSAH.

Debi and Josephine were the first people that the research team contacted, and they were happy to be partners in this work. Together they have brainstormed how to determine what success should look like for patients with the same injury as Debi.

In short, Debi went from research participant to research partner.

Because aSAH is rare and often deadly, Debi and Josephine have few peers they can talk to who have had the same experience.

“To be able to specifically work with a research team focused on subarachnoid hemorrhage was very healing,” said Josephine. “These were people who really understood what we had gone through.”

Debi and Josephine’s involvement became international. They were key partners in organizing a meeting at the International SAH Conference in Amsterdam in June 2019 called “Towards Consensus on Core Outcome Measures in SAH.” They both presented at this meeting and hosted it alongside Dr. English and researchers Dr. Justin Presseau and Victoria Saigle.

Debi and Josephine recognize the importance of research, which is why they continue to contribute their time and energy to Dr. English’s work as partners on the research team.

“As a society we make advancements when we do research,” said Josephine. “When you go through something like this, you hope any improvements could help other people in this situation.”

This is just one example of how The Ottawa Hospital leads the way in the growing global trend of engaging patients in every step of the research process. Another example is The Ottawa Hospital’s Ottawa Methods Centre designated as the Strategy for Patient-Oriented Research methods hub for all of Ontario. The Centre provides guidance to Ontario-based researchers as they partner with patients for the first time. The hospital’s Patient Family Advisory Council also plays a key role in helping researchers engage with patients.

“I leave every conversation I have with our patient and family research partners inspired, and having learned a lot from them,” said Dr. English. “We’re trying to pave a way for patient engagement in research in aneurysmal subarachnoid hemorrhage, and to make the path clearer for others.”

Research at The Ottawa Hospital is made possible by generous donations to The Ottawa Hospital Foundation.

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