Why an Emergency Physician is Connecting Evidence, Experience and Equity to Sickle Cell Disease Care | The Clinical Compass

One conversation in the emergency department helped reconfirm why Dr. Jennifer Bryan’s work as Ontario Health’s clinical lead for sickle cell disease matters.

A young Black man living with sickle cell disease told her that when he came to the emergency department in severe pain, he felt he had to think carefully about how he was dressed so he would be taken seriously. He described feeling afraid and used to having to fight for care.

The conversation reflected a reality she has heard from many people living with sickle cell disease throughout her work as an emergency physician at Toronto General and Toronto Western hospitals. It also reinforced her understanding that improving care means addressing not only clinical gaps, but also the racism and inequities that shape patients’ experiences in the health system.

As an emergency physician, Dr. Bryan sees firsthand how gaps in care affect people living with sickle cell disease. As Ontario Health's clinical lead for sickle cell disease, she helps bring those insights to provincial efforts to improve care across the health system.

For Dr. Bryan, one of the most important parts of the role is helping build connections across the system.

“I see my role as a connector for the efforts across the province so that we can work together to get where we need to be.”

By bringing together clinicians, health system partners and community organizations, clinical leads can help create a more coordinated approach to improving care.

Putting Lived Experience at the Centre of Care

The first step to improving sickle cell care means listening to the people most affected by gaps in care.

To help inform the development of the sickle cell disease quality standard, an advisory committee was created that included people with lived experience, care partners, community groups, clinicians and administrators.

“I have never worked with a more passionate group,” Dr. Bryan says.

The committee helped define what high-quality care should look like from both clinical and patient perspectives. Their experiences, alongside evidence and clinical expertise, helped shape the statements in the quality standard.

“I’m very fortunate that in my role, I get to be a facilitator and connect all of these passionate folks and to be able to funnel their great ideas into practical steps that we can all take together.”

That ability to bring people together is central to the clinical lead role. By connecting clinical expertise with patient and community experience, Dr. Bryan helps ensure system improvements reflect the needs of the people receiving care.

Turning Evidence Into Action

Released in 2023, the sickle cell disease quality standard includes eight statements that describe what high-quality care should look like for people living with sickle cell disease.

Putting those statements into practice has required collaboration from across the health system.

One example comes from the Scarborough Health Network, where teams focused on improving emergency department outcomes. Using tools such as the sickle cell disease eReport, they were able to measure the time it took for physician to make an initial assessment and saw that patients were receiving care more quickly.

Funding also helped support existing sickle cell disease centres, create new centres closer to where people live and advance work in emergency departments, inpatient care, education and primary care.

Implementing the quality standard is just one way clinical leads have helped move evidence into practice and improve patient experiences and system collaboration.

Looking Ahead to the Future of Sickle Cell Disease Care

Success, Dr. Bryan says, is not only about improving a standard of care; it is about ensuring people living with sickle cell disease can expect high-quality care wherever they access services.

That future requires more than clinical expertise; it also means recognizing that the work of addressing racism and inequity cannot fall only on the people and communities most affected by it.

Clinical leads are uniquely positioned to support that work. They can identify gaps, bring partners together and help turn shared priorities into action.

Through her role, Dr. Bryan continues to connect evidence, experience and equity to advance sickle cell disease care across Ontario.

For more information about the work to improve care for patients with sickle cell disease, read all about it in the highlights of Ontario Health’s Black Health Plan.