Alumni profile: Linda Rabeneck on the past, present and future of colorectal cancer screening

The career of Linda Rabeneck (PGME ’80 Gastroenterology) has been shaped by curiosity, clinical insight and a steadfast conviction in the power of preventive medicine.

Rabeneck trained in internal medicine and gastroenterology at the University of British Columbia, with part of her GI training completed at the University of Toronto’s Faculty of Medicine (now the Temerty Faculty of Medicine). Early in her career, she pivoted from private practice to research and completed a Master of Public Health at Yale University. She then joined the faculty at Baylor College of Medicine in Houston where she worked for 12 years.

Rabeneck returned to U of T in 2002 to take on the directorship of the Division of Gastroenterology and has remained on faculty with the Department of Medicine ever since. There, alongside her work as a senior core scientist with the Institute for Clinical Evaluative Sciences (IC/ES) and as vice president, prevention and cancer control at Cancer Care Ontario and in many other leadership roles, she helped pioneer research on colonoscopy quality and led national efforts to establish colorectal cancer screening programs. Her work has had lasting impact across Canada, helping to transform screening from an underused intervention into structured, organized, population-wide programs.

Rabeneck has also received innumerable awards and accolades, including an appointment as Member of the Order of Canada in 2024.

We chatted with Rabeneck about her career at the forefront of gastroenterology research and cancer screening development and implementation.
 

How did you first become interested in the research side of gastroenterology?

It was early in my practice, in the mid ’80s. I started to see patients with unusual presentations — painful swallowing with deep punched-out ulcers in the esophagus, accompanied by a fever and sometimes a skin rash. I remember thinking, I can’t explain what’s happening to these patients. I searched the literature but couldn’t find anything. I had been trained as a gastroenterologist, not a researcher, so I didn’t even know what questions to ask. Eventually I found someone to conduct some electron microscopy and, long story short, learned it was the onset of HIV infection.

That process of clinical investigation — trying to answer a question that came directly from patient care — captivated me. So, I closed my practice and I was very fortunate to be accepted to the Robert Wood Johnson Clinical Scholars Program at Yale where I studied for two years.

What led you to colorectal cancer research in particular?

That shift came later while I was at Baylor, when I had what I would call an epiphany. The evidence proving the effectiveness of colorectal cancer screening was overwhelming — yet no one was doing it. That just stopped me in my tracks. I thought, how can this be? I stopped the other things I was doing and turned my attention to colorectal cancer. I became very interested in questions like “how often do we miss a cancer?” That led to our work on the quality and effectiveness of colonoscopy.

What would you say are some of the most pivotal moments in your career?

Coming back to the University of Toronto in 2002 was a turning point. What really struck me was the opportunity with IC/ES and access to its data holdings that cover every Ontarian from birth to death. I had been working with the Department of Veterans Affairs data holdings in the U.S., which was almost entirely men, and suddenly I was looking at general population-level data. I was floored at the volume and breadth of data — and there was nobody doing research in digestive diseases with it.

But the bigger highlight, for me, was pushing colorectal cancer screening forward in this province and in Canada. At that time, we were a screening backwater. We had a solid case for screening, and we were doing nothing.

I then got very involved in advocacy — giving talks… trying to make people uncomfortable, frankly. That led to Cancer Care Ontario recruiting me to leadership roles, and eventually to a $200-million investment from the provincial government and the launch of the first organized colorectal screening program in Canada. That was a landmark moment.

How would you describe the current state of colorectal cancer screening in Ontario?

It’s a very good program now. Over the years, it has deepened and strengthened. We started with the older fecal occult blood test, and then replaced it with the FIT test, which is much better. But more importantly, it’s organized — that’s the key. An organized program means you know your target population, you invite people to be screened, you ensure access to testing, you follow up, and you measure and report performance. That’s how you make it work at a population level.

Now, every physician who performs colonoscopy receives annual feedback on their performance, measuring things like the number of procedures they perform and their adenoma detection rates. Awareness has also increased significantly. When we started, a lot of people didn’t even know they should be screened for colorectal cancer. Now awareness is high, and the system is much stronger as a result.

How are you managing the transition away from your many and diverse leadership roles?

Well, I’m retired — I can say that now. At first, I couldn’t even use the word; I called it “stepping down.” But I’ve learned that you don’t really retire from something that’s been your passion.

I tried doing some consulting, but it wasn’t my cup of tea. You get asked to weigh in, you write a report, and then you hand it over — and you can’t move anything forward. After years of being accountable for getting things done, I found that frustrating.

What I am doing now is work that feels meaningful. I’m co-chairing a task force with the World Endoscopy Organization focused on strengthening screening in low- and middle-income countries, and I’m co-leading the screening working group for a Lancet commission on colorectal cancer. That work is engaging and purposeful — I feel like we’re going to produce something useful.

There is a sense of loss of purpose when you step down, there’s no question. But if I think something is meaningful, I’ll do it. As someone once said, if you can tell me how you retire from a passion, I’d like to know — because I don’t.