Dr. Angela Colantonio exposes equity gaps with traumatic brain injury
Dr. Angela Colantonio is a researcher with ambitious goals: raise awareness of traumatic brain injury (TBI) and advocate for improved access to a high quality of care for survivors.
What is her purpose? Equity.
In the early days of her career, while studying in the area of stroke, Dr. Colantonio was approached by a mentor who suggested examining links between brain injury and dementia, and she felt compelled to follow this lead.
“Regardless of this link, I found that in contrast to the enormous impact, or the potential for disability after a TBI, so little had been done in terms of looking at long-term outcomes and quality of life. And it affects people across the lifespan. I found it was a relatively unexplored area,” she says.
Dr. Colantonio became affiliated with Toronto Rehabilitation Institute in 2003 when she was awarded the Saunderson Family Chair in Acquired Brain Injury Research. Working out of the Acquired Brain Injury (ABI) Research Lab at The KITE Research Institute, Dr. Colantonio says she leads “an amazing team of scientists, clinicians, and trainees, in collaboration with fantastic stakeholders including persons with lived experience.”
In addition to her role at Toronto Rehab and KITE, Dr. Colantonio is also Director of the Rehabilitation Sciences Institute at the University of Toronto and a Professor in the Department of Occupational Science and Occupational Therapy as well as the Canada Research Chair (Tier 1) in Traumatic Brain Injury in Underserved Populations.
Earlier in her career, Dr. Colantonio and her team identified higher numbers of TBI in underserved populations, including individuals experiencing homelessness and incarceration. They also studied injuries in the workplace. Then they began to uncover a sex and gender gap. Dr. Colantonio suspected a TBI could directly impact the female reproductive system, but it was tough to find existing research related to the effects of TBI on a woman’s body. And so, it began. She and her team started collecting data through surveys, interviews, and data mining health record systems to expose this knowledge gap.
Dr. Colantonio says she and her award-winning team, along with many collaborators, have become “well-known trailblazers in the area of sex and gender considerations in brain injury.” Because of their work, we know that sex and gender can affect what happens within the context of care. And ironically, in a quest for equality, we must recognize that regardless of gender, male and female bodies are not created equal. And they are not given equal attention in the context of medical research. “For a long time, animal studies were largely done on male rodents,” she says.
It’s been argued that females should not be included in studies because their fluctuating hormones might skew the results and data. Dr. Colantonio points out that “only relatively recently have our federal agencies required researchers to address sex and gender considerations in their proposals. It’s just considered good science,” she says.
Dr. Colantonio explains that this results in a more personalized approach to rehabilitation for everyone because individual care is the best kind of care.
Dr. Colantonio agrees that awareness of TBI is on an upward trajectory with recent campaigns and media coverage about concussions in sports. She’s grateful for the attention, yet eager to expand.
“We do recognize the enormous amount of progress that’s been made in terms of brain injury and concussion awareness through sports,” she confirms. “But the general public needs to recognize that brain injuries occur in workplaces, and in underserved places as well.”
Race and other socioeconomic factors also contribute to the vast number of variables affecting the cause, severity, and outcome of a TBI. Symptoms may be ignored or dismissed by frontline workers, caregivers, and even patients. Due to this complicated web of variables, every TBI is unique — impossible to predict, tricky to detect, and a challenge to treat.
“It’s not a one-size-fits-all approach,” says Dr. Colantonio, “We need to be aware that no two brain injuries are alike, and there are different considerations.” To address this, the team sifts through data to find patterns and isolate shortfalls — not only in our healthcare system but also relevant to our workplaces and our homes.
The ABI team brings a major focus to intimate partner violence (IPV). Victims of IPV may not report an injury for many reasons including safety, shame, or fear. And when these victims do surface in emergency rooms or at the desks of social workers, providers may not be trained to notice quiet warning signs of TBI like confusion and forgetfulness. And many are not equipped to navigate the referral process.
In their initial surveys of frontline workers, the team found that although physical injuries from IPV are commonly made to the head, face, and neck, many providers reported a lack of awareness and education to investigate the signs. Successfully catching subtle symptoms, and knowing what to do next, could make a positive and profound impact on the long-term quality of life for these people. At this intersection of IPV and TBI, victims can fall through cracks in the system.
Dr. Colantonio’s team, in collaboration with many stakeholders, has mobilized to prevent this from happening. Here are some areas where they are leading the way together:
- In 2016, the team co-organized Battered and brain injured: identifying and supporting brain injured women survivors of intimate partner violence, the first workshop of its kind in Canada, bringing the world of TBI and IPV together.
- In 2019, Dr. Colantonio was invited to speak at the 80th Canadian Psychological Association National Convention in Halifax where she delivered a talk called Beyond football: intimate partner violence.
- In 2022 Dr. Colantonio moderated the ACRM 2022 Chautauqua Symposium of experts, titled Intimate Partner Violence and Brain Injury: What every rehabilitation provider should know.
- The team developed a toolkit called Abused & Brain Injured, Understanding the Intersection of Intimate Partner Violence and Traumatic Brain Injury, providing information and recommendations to frontline workers so they can give better trauma-informed care.
- In early 2022, Dr. Colantonio and her team started the Traumatic Brain Injury: Addressing Inequities Speaker Series to increase awareness of TBI in underserved populations and as an avenue for explaining research findings. The series features talks and discussions on research, intervention, and policy updates relevant to TBI, underserved populations and inequities.
Future talks are announced on Twitter. Previous talks, as well as resources like the ABI toolkit, along with a collection of other accessible educational materials like videos and brochures, are available on the ABI Research Lab website. There, patients, families, and caregivers can find resources to help them on their unique journeys.
“One of my goals is to have greater access to rehabilitation, where needed, that could potentially make a difference,” says Dr. Colantonio. “Ensuring that this work could lead to more people accessing services — services that are actually helpful — would be great.”
During her time at KITE, Dr. Colantonio has witnessed many aha moments. Survivors develop awareness that their troubling symptoms may be due to a brain injury, and aren’t their fault. Providers come to the realization that their patients’ or clients’ symptoms and behaviours were not due to personal failures or lack of motivation, but because of an underlying neurological condition. This understanding brings with it an opening for accommodation and better communication between all stakeholders involved in the care process.
Dr. Colantonio points out they are still in the infancy stage of research into TBI. With every success, there is still much more to do, more to learn, and more ways to make a difference. Yet she remains focused on her goal.
“For me, it’s very validating — in particular, with sex and gender — the intense gratitude and appreciation we’ve received, particularly from female survivors we’ve met,” she says. “If survivors say it’s important, then that’s the most important thing to me.”
If you or someone you know has experienced a brain injury, and you’re unsure where to turn, please visit this link for access to a referral network for help.