A Problem Hiding in Plain Sight

How the PREPPP award helped put brain injury on Manitoba’s map

Dr. Lisa Engel, PhD and associate professor in the University of Manitoba’s College of Rehabilitation Sciences, focuses her research on financial wellbeing among people living with brain injury. What she kept hearing from clinicians was consistent: Manitoba doesn’t have enough services to diagnose and support this population. The consequences fall hardest on the people who are already vulnerable; brain injury is overrepresented among people experiencing homelessness, unemployment, and contact with the justice system.

“We have more people living with brain injury in the province than cancer.”

—Dr. Lisa Engel

Carleigh McKay, currently the regional director of community support services at March of Dimes Canada (MODC), spent years before this role helping people in the province find and navigate the services they need.

“When it would come to Winnipeg, if someone’s contacting me from Pine Falls or Flin Flon, it was always a little disheartening,” said McKay. “You could see the disparity between what was available in the urban and what isn’t available in the rural.”

In the fall of 2022, Engel sat down with Meredith Daun—then the regional director at MODC—for what was meant to be a get-to-know-you meeting. Daun had been conducting an environmental scan of brain injury resources in Manitoba when she heard Engel speak at a conference.

“At our first meeting, I realized that we had a similar passion for finding ways we can help build community,” said Daun. The problem, as Daun saw it, wasn’t simply a lack of resources: it was how unevenly the few available resources were distributed. “There was a large group of people who didn’t qualify for government programs,” she said. “There were the insured and the uninsured. It just didn’t seem fair.”

By the end of that meeting, the pair was already planning a community event. Engel recalled “We were really naive. We thought this won’t take long.”

Starting where you are, then going further

In November 2023, Engel and her team held a World Café on brain injury, bringing together people with lived experience, caregivers, and clinicians for an afternoon of structured small-group conversation. The group met in Winnipeg, a choice of practical geography, Engel said. They had planned five questions. The conversations were so detailed and passionate, they only got through four.

That was the point. The project wasn’t built on what Engel thought needed to be researched. It was built on what the community said it needed. And what that community said was clear: this problem doesn’t stop at the Perimeter.

That’s where the PREPPP award came in. CHI’s Preparing for Research by Engaging Public and Patient Partners (PREPPP) award funds the early, relationship-building work needed to build a strong foundation for future grant applications. For Engel’s project, it allowed the team to bring the research outside of Winnipeg.

“When you leave Winnipeg, everyone else’s mind is boggled,” she said. “They’re like, ‘what’s happening? Why is no one asking us about the Manitoba experience?'”

Five communities. No registration. Every last penny.

Between June and October 2025, Engel’s team held community events in Steinbach, Selkirk, Morden/Winkler, Brandon, and Dauphin, plus two additional online sessions. They reached more than 50 people with lived and work-related brain injury experience.

They also made a deliberate and unique choice about how to run the events: no registration. People living with brain injury often deal with cognitive fatigue, memory challenges, and the lived experience of a health system that has historically asked a lot of them while delivering very little.

“Creating registration for people living with brain injury can often be a big barrier,” said Engel. “It’s just that extra step that could keep them from participating.”

That choice helped shape what the team learned. In Brandon, more than 20 people showed up. People who had never attended the local brain injury peer group came out because they wanted to hear about the project. In Dauphin, where there is no active peer support group, the team connected with two new members from Prairie Mountain Health who are now part of the project team.

“We used every last penny [of the PREPPP award],” said Engel. “It was amazing.”

Community members as co-applicants

The PREPPP award didn’t just fund events. It funded the creation of a team built on a foundation of equity and partnership. For Daun, that mix of academic, community, and lived-experience voices wasn’t incidental; it was the point.

“It is essential to ensure we engage in research along with people who have the lived experience to help design and interpret information,” said Daun. “Individuals with lived experience help those who don’t gain a better understanding and a new view of the impact of research design. It reinforces the principle of nothing about us, without us.”

When Engel’s team applied for a CIHR project grant, co-applicants and collaborators included eight non-researchers and four community leaders—three of whom have lived brain injury experience. But getting there wasn’t simple.

“It’s a two-month process to get everyone through,” said Engel, referring to the CIHR registration requirements. Collaborators and co-applicants submitted support letters for the funding application, which they’ll hear back on in July 2026. The stories they shared often struck a deep chord with Engel and the team.

“I was crying while I was reading the letters,” said Engel. “We make assumptions about the values of people in the community. That’s our value system—getting a publication. And yet what we’ve heard is that’s part of how they feel valued.”

What the community keeps saying

In Morden/Winkler, the community told Engels team about their frustrations with physicians seeming uninformed about living with brain injury. In other communities, members spoke about the disconnect they felt between what they needed from their elected representatives and what they received.

The ideas existed, but brain injury often comes with cognitive fatigue and energy limits. The ideas needed support to bring them to action.

“We’re not putting on the brain injury lens, which could give a different perspective of how we address a variety of issues.”

—Dr. Lisa Engel

Brain injury shows up time and again in the justice system, in chronic unemployment, in strained long-term care facilities, and in people experiencing homelessness. A meta-analysis of 22 studies indicates up to a four-fold higher prevalence of brain injury among those experiencing homelessness compared to other populations.

Janine Bramadat knows this gap well. As prevention manager at End Homelessness Winnipeg, her work sits at the intersection of structural advocacy and the daily realities of people experiencing homelessness. She joined the project because of what she saw time and again: people in shelters who had experienced brain injury but never received the support they needed.

“Often you’ll be talking to an individual and you’ll ask the question have you ever had a head injury?” said Bramadat. “You’ll be looking at a scar, a full stitch-up, and they’ll be like ‘no, never.’ People don’t always recognize that a brain injury may have occurred.”

The 2024 Winnipeg Street Census asked about brain injury for the first time, in part because of the advocacy this project has generated. But even that data likely undercounts. In Bramadat’s experience, people don’t connect a fall, an overdose, or a violent incident to brain injury. While 27 per cent of those surveyed for the Street Census reported living with a brain injury, other indicators in the survey suggest pieces of the picture are missing.

Engel’s long-term vision: a coordinated provincial strategy that addresses what people living with brain injury actually need. She described “a Brain Injury Care Manitoba, comparable to CancerCare Manitoba.”

“We have more people living with brain injury in the province than cancer,” said Engel.

What comes next

While waiting for the CIHR funding decision expected in July 2026, the team has continued to hold public townhalls to update the community on the project and hear more from Manitobans living with brain injury.

The timing matters. At the federal level, Bill C-206—which proposes a national strategy on brain injury—is working its way through Parliament. For McKay, that creates an opening the project is well-positioned to fill.

“The Feds are saying, we’re doing our piece at the national level,” said McKay. “What are you going to do at the provincial level? The timing for this project fits nicely in terms of creating a vision of an informed direction for [Manitoba].” After years of patchwork resources, the voices are converging. “This is kind of the first time in a long time that eyes, ears, momentum, and voices are amalgamating,” she said.

Whatever the CIHR decision, Engel says the project continues. The team is planning its next steps, driven by the same principle that has guided the work from the beginning: the community directs, the research follows.

“I just feel like a conduit,” said Engel. “The community brings the insights.”