Episode 003: An overview of colorectal cancer screening guidelines and discussion of the NordICC trial
Guests: Dr. Linda Rabeneck and Dr. Jill Tinmouth
SHOW NOTES
Huaqi Li
Thanks so much for tuning in again to Scope Notes, your gastroenterology focused medical education podcast created by learners for learners!
For any new listeners, I’m your co-host Huaqi Li, current first year Internal Medicine resident at the University of Toronto in Canada working with my co-host Mo Bucheeri, current 5th year Gastroenterology fellow and Chief Resident also at the University of Toronto.
Mo Bucheeri
Hello!
Huaqi Li
Our amazing faculty advisor is Dr. Parul Tandon, a Staff Gastroenterologist and Clinician Scientist in inflammatory bowel diseases at the University Health Network/Sinai Health in Toronto.
With Scope Notes, you can look forward to monthly episodes covering all things GI including practice guidelines, research reviews, and special career topics! We’ll be specifically featuring prominent Gastroenterology staff from the University of Toronto and across Canada for their expert opinions. So come join us from your favorite podcast streaming app!
We would like also to extend a big thank you to the Division of Gastroenterology and Hepatology at the University of Toronto for their generous support of this podcast.With all that being said, let’s move on to our episode!
March is Colorectal Cancer Awareness month! So, today’s episode will focus on the role of colonoscopy surveillance for colorectal cancer and a review of the recent NordICC trial. We’re very fortunate to be joined today by two leading experts in the field, Dr. Linda Rabeneck and Dr. Jill Tinmouth. Dr. Rabeneck is a gastroenterologist, physician scientist, and health care executive. She served as the former Vice President of Prevention and Cancer Control at Cancer Care Ontario, and she played a leading role in launching ColonCancerCheck, Canada’s first organized, province-wide colorectal cancer screening program. She has been the recipient of multiple awards and accolades, most recently being appointed a Member of the Order of Canada. Dr. Tinmouth is a gastroenterologist and health services research who has led a similarly prolific career thus far. She currently serves as the Provincial Medical Director, Cancer Control at Ontario Health and as Lead Scientist for ColonCancerCheck. She also was the former Director (2020-2023) and Associate Director (2017-2020) of the Clinical Epidemiology and Health Care Research program at iHPME (Institute of Health Policy, Management and Evaluation) at the University of Toronto.
Dr. Rabeneck and Dr. Tinmouth, very excited to have both of you on today’s Scope Notes episode. Thanks so much for joining!
Before we get started on discussing this important topic, could you tell the audience a bit about yourselves, where did you do your training, and how long you've been in Toronto, and a bit about your clinical and research interests as well?
Dr. Jill Tinmouth
Yeah, so I'm Jill Tinmouth. I'm a gastroenterologist at Sunnybrook Health Sciences Center. In terms of a little bit about myself. So, I'm a little bit late to medicine in a way, I did an art history degree, and I taught grade school for a few years, and then I went to medical school, actually in the States, at NYU, before coming back here to Toronto to do my Internal Medicine, and then my GI fellowship. And then after that, I did a PhD in Clinical Epidemiology at the Institute for Health Policy, Management, and Evaluation.
My area of research is in cancer screening, specifically colorectal cancer. And I sort of try to focus on two particular questions within cancer screening, how do we get the most people screened, and then what's the best way to deliver population-based screening within the population based or organized cancer screening to those who choose to participate.
Dr. Linda Rabeneck
Like Jill, I've had a maybe a slightly unorthodox path to here. I trained in GI at UBC and University of Toronto, and then in the first phase of my career, I was in private practice at St Paul's Hospital in downtown Vancouver. People that know it love it. And then I got very interested in doing clinical investigation for which my clinical training didn't provide me any education on, so I closed my practice, and I went to the US, and I was at Yale University as a Robert Wood Johnson Clinical Scholar for two years and got my Master's in Public Health. So, then I switched tracks from private practice to an academic path, and I took a job at Baylor College of Medicine in Houston, Texas. David Graham was the Section Chief, and I was there for 12 years. And it, towards the end of that time my research changed to focus on colorectal screening, and I could get back to that. So that was in about, I came back in 2002 to Canada after 14 years in the US. And then when I came back, I was recruited as the Division Director for your division, and I did that for three years. And then I got roped into the work of Cancer Care Ontario, the provincial cancer agency, and I was a Regional Vice President, and then I was the Vice President for Prevention and Cancer Control. And so, I would say my career evolved from full tilt, fee for service, private practice to academic practice, with heavy focus on clinical investigation. And then as I moved into policy work, I stopped seeing patients and then maintained the policy work and the research interest. And I would say, though I've stepped down from my role at Cancer Care Ontario, I continue to be involved in research.
Huaqi Li
Thank you both so much. I feel like you've had such fruitful careers so far. I'm excited to hear more as we talk today. Dr. Tinmouth, could you start us off with a brief introduction to colorectal cancer, such as the epidemiology, the pathophysiology, as well as the importance and utility of a colorectal cancer screening program?
Dr. Jill Tinmouth
I always like to say that colon cancer, and especially when we're I think maybe speaking to this audience is preaching to the choir. It's an important health problem. If we look globally, it's the third leading cause of cancer related death, and Canada is actually one of the places in the world with the highest incidence and mortality from colorectal cancer, not the absolute highest, but we're up there. And overall, it's the second leading cause of cancer related death and the fourth leading cause of cancer. In terms of epidemiology, I think we are continuing to learn about this, but I'd say that probably the two most important factors that we have considered with respect to one's risk of colorectal cancer has to do with one's age, I'll get back to that in a second, and a family history. And then within family history, there are those, colon cancers are one of the cancers in a variety of genetic syndromes such as FAP or Familial Adenomatous Polyposis or Lynch. And the other big one that people know about is Lynch syndrome.
But also, and much more commonly, in terms of people, there's increased, what we call increased risk, which is where persons have a single, typically a single first degree relative with colorectal cancer, and those individuals are also at increased risk of getting cancer. So, family history is an important component. And then, as I mentioned earlier, age. And age is an interesting one, because, historically, we've always seen sort of the line in the sand as being age 50, and that's how we've organized our approach to cancer screening, etc., in that we consider people, once they hit age 50, to be at elevated risk, and that's the sort of our so called eligible or target population are, typically people over the age of 50.
One of the things that people have seen a lot in the media recently is that there is this concern around what was called early onset colorectal cancer, and that appears to be a birth cohort phenomenon in that people born after the year 1970 that's the sort of the birth cohort concept. They seem to be at higher risk for their age relative to people who were born before that date. And so, we're sort of seeing this group kind of moving through as they age, and that's a group that I think we're keeping a close eye on. And I think one of the things to just point out, and Linda always likes to make this point, and I agree with her 100% which is that even though this is certainly an area to focus on, because the relative change has been important, it still represents a fraction, a tiny proportion, of the total cancers, the total number of colorectal cancers that are diagnosed every year. So, in terms of absolute risk, it's still quite low.
In terms of pathophysiology, I think many people are sort of familiar with the concept of the adenoma to carcinoma sequence. So, adenomas are pre-cancerous lesions, and there are certain mutations that are involved in sort of producing an adenoma, and then there are further mutations for that adenoma to transform into a cancer. And that's sort of a very established and well recognized path. There are also other paths that we're starting to understand more about. And one of the important ones that I'll mention is a sessile serrated pathway, which is a different set of molecular mechanisms.
And then finally, I think you asked me about the screening programs, so I think this is a critically important concept. I'm glad we're talking about it. And so we would call, we sort of make the caveat around that we are interested in what we call organized sometimes people refer to that as a population based screening program. And that is something where a program that takes a systems level approach to screening, as opposed to opportunistic screening, which is typically something that happens between an individual and their provider, typically during a one-on-one encounter, where there's a discussion around screening and a decision made in terms of how to proceed. Organized screening is, is something that really tries to, is almost a public health approach, and it has certain key concepts or principles behind it, that a lot of people may have learned about in medical school. There's the important thing is the disease has to be common, and it has to be burdensome, which I think I've already made the point that colon cancer is. There needs to be a detectable pre-clinical phase. So that's the adenoma or early clinical so an early colorectal cancer. And there needs to be a population that you can define, and we call that the target population, or the eligible population. And a key aspect of organized screening is that entire eligible population is invited to be screened like they have the opportunity to be screened. And so, it takes out, you know, the concepts of access to a primary care provider, education in terms of knowing about it sufficiently to ask or to make one's case to one's provider, etc. And then you need to have a test that has acceptable accuracy, that's safe and easy to implement and is acceptable to patients. And then lastly, there is some sort of infrastructure that includes personnel, oftentimes an IT system and that supports the program, and it also allows for sort of quality management. So, you want to make sure that you're delivering the highest possible cancer screening services to the eligible population. And so having a program allows you to evaluate, measure and monitor and so that's a critically important. So, if you do all that, ideally, what you're doing is you're sort of maximizing the benefits of screening for the population while minimizing potential harms, because there are potential harms if screening is not done well, even if it's done well, there still can be a harm, but there can be more harms if you're not implementing it in a careful and thoughtful way.
Huaqi Li
Thank you so much. I think it's really interesting to think about the kind of organized versus opportunistic screening, and I think that lays a really great foundation for discussion in a little bit about the NordICC trial as well. Switching gears a little bit. Dr. Rabeneck, could you give us a brief overview of how colorectal cancer screening was first implemented in Canada, and your pivotal experiences with launching the ColonCancerCheck in Ontario?
Dr. Linda Rabeneck
Well, yes, it's a subject dear to my heart, but the main, the initial point was the recognition. It was an epiphany for me. Let me put it this way, I was invited to a meeting while I was still in the US. And the NIH was, the National Cancer Institute, the NIH was doing a stock taking of all of its investments in cancer control. And what was so shrieking-ly obvious was the evidence to support screening in terms of reducing mortality from the disease was bulletproof, bullet proof, three large scale randomized trials published in the early 1990s and here we are. Here we were in Canada in 2000, 2002 with nothing going on, absolutely nothing. And I had a slide I used to show, here's the list of provinces with an organized screening program for colorectal and it was 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, all blank. So that, for me was the, you know, the epiphany. And I just said to myself, I'm going to stop everything I'm doing and work on this, and it has been such a privilege to do that.
So, the mountain of evidence and no moving forward. And then for those of us who are clinicians and academics, I think one of the things we often forget or don't pay any attention to is it's insufficient to publish a paper, no matter how strong, how well done it is, and what journal it's in, it is insufficient to give a talk and make the case for. You've got to figure out, because, as Jill's pointed out, this is screening. Organized screening is a very large public health intervention. It's an intervention, like giving a prescription for an antibiotic. It's an intervention, but it's a large public health intervention. And in order to get a large public health intervention, you have to have public dollars invested in it. We're talking millions. And then you have to have a team put together to design it and implement it. So as an academic coming to this and a clinician investigator, you really had to figure out who's making decisions. Who decides where the funding goes, who decides who decides. And you really have to do all of that work, which is not the traditional work of clinicians or academics.
And really, I would say, one of the things I learned the most, I think, in doing all of this, was going over to the dark side, the other side of the fence, and learning how things get moved forward, and learning from others who are expert at that, they weren't necessarily clinicians or academics, they were in other fields, but learning how that, going from policy to getting a funding commitment to an actual plan and an implementation, so all of that. And that's why you can't just stand up at Grand Rounds and say, this is what we need to do and then walk away. Nothing will happen. And so that's been a huge learning, and it's a bit of an art form, but it's something I remain very interested in, is how you move forward, and when you know that something's evidence based and should be done to improve health. So, long story short, we were able to move forward and have a funding announcement. A lot of work went into this. But finally, there was a day in January 2007 where the then Minister of Health made a funding announcement of $200 million over five years. And once we had achieved that, we knew that it couldn't be reeled back in. When a minister makes a public announcement. So that was epic, and then it took another year for the actual public rollout. It was gFOBT, in the beginning. The public rollout began a year later. But that funding announcement was absolutely crucial, and a lot, a lot a lot of work went into figuring out how to get us there, figuring out how to get a Ministry of Health to make that size of commitment. It wasn't that we had to create new evidence.
Dr. Jill Tinmouth
I just want to make one point here. I know you've got maybe more to say, but I think one of the things that Linda is illustrating here is the like, the phenotype of a clinician sometimes is not compatible. Just how we get trained as clinicians is not necessarily compatible with this incredibly important work, because I think we're used, I would often say we're used to giving Lasix to somebody who can't breathe. We walk away, 20 minutes later, we come back. They can breathe, right? And this, what Linda is describing. I mean, she's doing a great job, but it doesn't fully explain how much effort and how much patience and how much persistence has to be undertaken to make change. And you're 100% right. Linda, people do stand up at Grand Rounds and say, this should be done, and you know, they're not wrong. Sometimes right, like they're right, but actually, how to move the dimes? Super tricky.
Dr. Linda Rabeneck
A favorite example of mine is a good, very good colleague, very well-known clinical epidemiologist in the country, did lovely work, New England journal publications on something like anticoagulants and atrial fib and thrombotic events, something like that. And he said, well, Linda, what we do is, I said, congratulations on the paper. Fantastic. Got it out there. Really nice, high impact. I said, now what? And he said, what do you mean? I said, now what you've shown that we fall short. We have people that we could have been identifying, that could have not had a stroke, based on your work, like now what? He said well, I'm just going on to the next topic now. So that's what we do as academics. And it's one of my beefs, put it different way, it's one of the opportunities for people in academic medicines to figure out how to follow through and actually affect some large-scale change. Yeah, I'm very interested in that. And there's no set pathway. And when you go to, when I go to international meetings, it's very interesting, when you have a set of countries can be Europe, for example, and you'll see some countries that have plunged ahead, and they're doing really nice work, and they've got an organized screen program. And others, they get up at the podium and talk about it year after year after year, and never get a funding commitment and never move forward. And I'm always interested in what's going on there. Can we look under the hood and figure that out and help them?
Huaqi Li
I think that's so important. Because, you know, like you said, the research obviously, is also important as the foundation, as the evidence, but then you have to do something to implement that work.
Dr. Linda Rabeneck
Yes, and so, you know, and as clinicians, what can you do if you're practicing at St. Michael's Hospital? I always say this, you're going down to see your patients in your clinic and you notice that something's missing. There's no blood pressure on the chart. You can then say, okay, you can say to the staff, I want a blood pressure taken on all my patients, please, when they come in. You can get that affected within a day, and that's good, but it's not what we're talking about, about this thing.
Huaqi Li
For sure. And what you implemented was so large scale, it's hard to wrap our heads around, given that, you know, it's so ingrained now, in our training and just our regular lives, that even in the early 2000s Canada didn't have something like the program.
Dr. Linda Rabeneck
I would, I would say one other thing, and Jill could speak to this also, is that when you have a design like in the case of colorectal. Each province has, there's a lot of heterogeneity and design across the country, even though all the programs are now using FIT, yeah, but there's a lot of heterogeneity in the actual details. The actual, it's a pathway, it's not a test, it's a series of steps. And the way we get from Step A to B to C is a little different in Alberta versus Ontario. And okay, fine. But once you've got a design and you've got that thing funded, and you got the thing out there, it's challenging to make a change. It takes a while, and there are similar set of reasons around why. So, one of the learnings is it'll never be perfect. You have to figure out when, when it's okay to launch. You don't want to delay it but recognizing you may not get everything you want when you go out the door and to affect the change that seems so trivial to someone standing up at Grand Rounds saying, this is what Ontario's program should have done. It's not that easy.
Mo Bucheeri
I do appreciate the difficulties and establishing change once it's done, because then you flip to if it ain’t broken, don't fix it.
Dr. Linda Rabeneck
Yeah. And then you're making the case, and the environment is a little different. And the one of the other observations in policy work is, some very wise person taught me this, that in policy work, 85% of achieving success is being prepared, getting ready, doing the literature review, figuring out what the ministry needs to make a decision. What do they want? Not what you think is an academic they should have, but what do they need? What do they want? Preparing all that material, preparing, preparing, 85% and then the window can open. And, my goodness, you got to be ready to go because the window will close again. There are electoral cycles. There are priorities that come and go. So, when the window is open, you got to go, and you got to be ready. And that's another thing. And then the chance to make an alteration, once you've got it going, is the window you've got to wait for another window often, not wait, but prepare for it.
Huaqi Li
That's a great point. Thank you. And just for listeners who might not be as familiar with the ColonCancerCheck, could you briefly just touch on what exactly that is?
Dr. Linda Rabeneck
Jill has described, it's an organized colorectal cancer screening program that was launched in Ontario, as I mentioned, funded in 2007 by the Minister, and then launched in 2008 initially with using the gFOBT, the guaiac, and then in June of 2019 replacing with the FIT, the Fecal Immunochemical Test. So, everybody in the target age of 50 to 74 receives a letter of invitation. Dear Linda, our records show that you're not up to date with colorectal screening. Go and talk to your family doctor about getting screened. And then I go and talk to my family doctor, and she shoots a requisition off and the kit gets sent to me, and I do it, put it in the prepaid envelope, and it goes to the lab, results come back to the program and to me, the participant. And then, dear Linda, results show that the next recommended step is a colonoscopy. Please go back to your family doctor and talk to her about getting a referral for a colonoscopy. And then I go do that, and I get referred. I get a colonoscopy, by someone in the division, because my stool, my FIT test has been positive. And then I get to find out whether I've got high risk adenomas or not, and so on. And then, according to the recommendations, the guidelines from the province and the endoscopist, I would then get surveillance as needed, using colonoscopy if adenomatous polyps were found. And Jill could speak to this, but there are, there are efforts underway to strengthen elements of that, but that's the basic design.
Mo Bucheeri
For both of you, so in the realm of colon cancer screening, the NordICC trial is a hot topic. Dr. Rabeneck, can you walk us through the significance of this trial and its findings?
Dr. Linda Rabeneck
Yeah, it was published in the New England Journal in 2022 I think it was. And the first author is Michael Bretthauer, our colleague in Oslo. It was a big, randomized control trial that was conducted in Poland, Norway, and Sweden. And it was launched in 2009 and what they published in the New England Journal was the 10 year follow up results. And so, men and women, 55 to 64 were invited to screen with a one-time colonoscopy versus no invitation. So, the comparison group is usual care. The primary endpoint was colorectal cancer, there were two primary endpoints, colorectal cancer, and colorectal cancer death. And long story short, at follow up, they had follow up information on 85,000 people, roughly. Long story short, the central findings which have created a lot of discussion are in the intention to screen analysis, so that was analyzing persons that were participating according to the group in which they were randomized, according to the randomized group. There was a reduction in the risk of colorectal cancer by 18% and that was statistically significant in the persons randomized to colonoscopy. However, there was no difference in the risk of death from colorectal cancer between the two comparisons group when analyzed according to the group in which they were randomized. So, people said, oh, gosh, this is disappointing. Why no reduction in colorectal cancer death? What's going on? One of the central points about the trial is, of those who are randomized to colonoscopy, not the usual care arm, which were not invited to screening, but those who randomized to colonoscopy, only 42% of them took up the offer and had the procedure.
So, for me, although many clinicians in practice, were looking towards this trial to answer the question, how effective is colonoscopy compared with no screening? How good is it? It really didn't answer that question. It answered the question, how effective is an invitation to colonoscopy compared with no screening? So, one of the central points you learn in, when you learn research methods, is you may have a question in mind, like, how good is colonoscopy? How effective is it? But if you design the trial in such a way, you have to be careful in how you design a trial, because it might answer a different question. And that's what happened here. Now these authors argue that that was, they answered the question they wanted to answer. And they are in Europe, and they use organized screening as a method for their screening programs by and large in Europe, and they wanted, then they have population registers, and they wanted to know, if you invite a huge number of people in a population register to go get colonoscopy, and compare that with no screening, what do you find? So, for them, it answers the question about organized screening for colonoscopy. For our colleagues in the US, they said, no, no, no, this isn't pertained to us because we only had a 40%, 42% uptake in colonoscopy. It would be much higher in the US, because we use colonoscopy. People are used to it. The uptake is much better. So, our colleagues in the US argued this, these findings are not relevant to us. Now the authors went back, and they said, okay, they went back, it's in their publication in the journal. They also, in addition to the intention to screen analysis, which I just described, which is analyzing participants in the group to which they were randomized, they also did an additional analysis that they call it a per protocol analysis, and it analyzes persons who actually got colonoscopy and compared them with the usual care group, and then they did see both a reduction in the risk of the disease and in death from the disease.
Critics say, well, yeah, but a person who undergoes colonoscopy or chooses to might have a different risk and so on. Per protocol analysis is not as strong a design, and so it was not emphasized by the authors in the paper. Other critics have said, well, they analyzed it too soon. They call it an interim analysis at 10 years, because the study authors explained to us that they were originally intended to analyze it 15 years, and they are going to do this, they're going to re-do the analysis at 15 years of follow up. So did they address the question we really wanted answered? That's a question. Did they analyze the results too soon? That's a question. And then third group of critics have said, yeah, but your adenoma detection rates are kind of low-ish. Maybe you don't have high quality colonoscopy going on there in those three countries when you did study. So, and there are a number of other criticisms, but there's a lot of, as you said, Mo, if you go to a meeting, there will be a panel discussion on the NordICC trial, and there will people on both sides arguing the case.
Dr. Jill Tinmouth
I think, I mean, yes, you're right. I agree with everything you said there, Linda, but I do think, from the point of view of you know, our approach to colorectal cancer screening in Ontario, it does help us, because we do have a population-based approach, right? And so. And I think what people fail to recognize, and this is a bias that we have as physicians, is that we only see the people who are in front of us. We only see the people who show up for their colonoscopy or who do their poop test, right? And then it's positive, and they show up for their colonoscopies. And we have to realize that when we think about the benefits, and Linda has already pointed out, this is a huge public investment of taxpayer dollars, when we want to think about the benefits, we want to think about the benefits for the entire population, and you have, screening’s effectiveness is measured in a very simple equation, which is participation x effectiveness, right conceptually, and so if you have a very effective test, great test, perfect test. But it's so hard to do, or toxic or expensive, then you're going to get low participation, so you're not going to get a very, it's not going to be very effective at the population level. Conversely, if you have a test that everyone's willing to do, but it doesn't tell you anything, or it's not very effective, then you're also not going to win. So, you kind of need that, that space in the middle and I think that the critics of the NordICC trial even in the American context, I hear what you're saying, Linda, but even in the American context, they are failing to recognize that they're just not seeing all of the ice under the tip of that iceberg of people who aren't showing up for their colonoscopies, right? So even outside of organized screening, I think this has bearing in the way that they did it is actually quite relevant.
Mo Bucheeri
Do you think we have numbers, are there any numbers on how many patients who require, not just eligible, require, colonoscopy fail to show up?
Dr. Jill Tinmouth
Sure, do you mean after a FIT, or do you mean in general Mo?
Mo Bucheeri
After a FIT let’s say.
Dr. Jill Tinmouth
We do have that. This is frankly, one of the great wins and actually is a great story. I think it tells the story of why organized screening is so important. So, when Linda launched the program, in 2007, the follow up rate after gFOBT, and this is just gFOBT done in an opportunistic way, was 68% so you can see like, so there's fully, like a third of people not getting their follow up colonoscopy. We didn't really know that, Linda actually had to measure it wasn't really well known. So that's another advantage to a screening program because you measure and monitor and evaluate, these are all things, by the way, that Linda taught me, because I've learned from her over the years. So, you measure monitor evaluate. So, we, once the program was rolled out, we started to measure this, right? We knew it was low, and we started to measure it. So when we got to the point of, just prior to the pandemic, even, but even through the pandemic, we were seeing follow up rates of 80%, around 80%, maybe a little less sometimes, but more, so we have gone up absolutely right, you know, a big chunk. Think about the changes that you see in medicine, we see relative changes of 12, that's a 12% absolute change. That's a huge jump. And that speaks to the fact that the organized screening program, well, how did we do that? Well, we did it because for tons of little nudges, measured, reported back, spoke to, you know, communities of practice, sending letters to patients to tell them that their result, we saw a bump when we told patients themselves, rather than just telling the physicians.
So, this is all the sort of result of the effort of taking an organized approach to screening. And so, we do see like quite good follow up after a FIT in Canada. And I'll tell you one other thing, that's actually done in a sub optimal way, like the best modalities in terms of screening programs would be to navigate people once they have an abnormal test and someone calls them, books their colonoscopy and they get navigated through. This actually requires sort of a somewhat, you know, we have to go back to the family physician. And the ball, not the family physician’s fault. The patient might not show up. The family physician may have many things on their plate. The endoscopist may not receive the referrals. We just have this sort of semi-broken system where we don't hand things off well. And so, the navigation would be the best way, and we still get 80% because of our organized program. If you look to other jurisdictions where they have a whole program that takes the participant from screening test through to their colonoscopy, when required, you can see higher follow up rates. So, so you know, get up close to 90%.
Dr. Linda Rabeneck
I was just going to make one more editorial comment, just underline one of the points that Jill’s pointed to, which is, as a result of the launch of screening programs in the provinces and territories, what we've seen is and elsewhere in the world, is a tremendous attention to colonoscopy quality that we never had before. We didn't measure it. All we could do in Ontario, by the way, was count the number each year, because we knew the OHIP billings right, so we could tell how many there were, how many hundreds of 1000s there were a year, half a million or so. But we didn't know anything about the quality of them. And all this focus on post-colonoscopy colorectal cancer rates, adenoma detection rates, completion rates, even bowel prep. All of that focus on the quality measures related to colonoscopy, came about, subsequent to the big focus on launching colorectal screening. So as Julietta Patnick, who used to be the Director of Screening for the NHS, she said one of our principles here is, and I think this is right, we want all boats to rise. We don't just want high quality colonoscopy for the folks to go through the screening program. We want it to spill over, and we want all boats to rise. So, we want the colonoscopy quality across the whole service, as they would say in England, across the whole service, to rise. And I think we've, we've also adhered to that notion.
Mo Bucheeri
I was going to ask. So, we're getting 80% of patients who are FIT positive going for colonoscopy. Once step before that is how many patients, people get sent the letters and actually take up the FIT tests, is it also around in the same range, about 80% or?
Dr. Jill Tinmouth
No, we are lower in that, I will say one thing Mo, I want to say just to go back to that point before I answer your next question, I should have said 80% within eight weeks. So that's another win, right? It wasn't the, because sometimes we when we look at over six months, it's actually closer to 90% but in a timely fashion. So, I didn't make that point clear.
So yes, your question about participation, so that's critically important. And we do know there's some nice work done by the Dutch that shows that the effectiveness, like sort of what I was pointing out before, the effectiveness of the program really does depend on participation, and they've done this with FIT. Because we live in, we live in an interesting landscape in Ontario. We have an organized program, but the elephant in the room is opportunistic screening, which exists, and that exists because people do average risk screening colonoscopy, and there are really no limits on that. We have a lot of colonoscopy available per capita relative to other countries and so people and even relative to other provinces, and so relatively freely, people can get a colonoscopy if they want. So, because of that, we don't measure participation only as the FIT participation, because it doesn't capture the whole ball of wax. So, the way we measure it is with what we call being up to date with either colonoscopy or fecal testing. And our rates are around 60% in the province, and that, you know, is actually fairly comparable to what we see for mammography and maybe a little bit better than what we're currently seeing for pap smears, not too different from, I would say, probably most other jurisdictions in the world.
There are exceptions. If you look at the at the Kaiser Permanente system in the US, the HMO in the US, really interesting model, similar structure in terms of an organized screening program embedded within an HMO, which is a very large population of people within that HMO, larger than Ontario. And what they've shown is that with not just inviting people, but a series of other nudges that they do, they do these things called FIT flu clinics, where if you go to your flu shot, they offer you a FIT test. If you go to their electronic reminders within their EMR, so that if you go to see your cardiologist, a reminder shows up. Oh yeah, this patient hasn't had their FIT test, encourage them to get their FIT test. So, they have a multi-pronged approach that we do some of it, we do the mailed invitations, but we don't do all the other things in Ontario. And with that, they've been able to get to 80% participation. But that's actually one of the few jurisdictions in the world, or examples in the world that I know has gotten that high. I know Linda, you may know of others, but I don't know of anywhere else that's gotten, achieved better results.
Dr. Linda Rabeneck
Oh, they're pretty high. They do this in in reach and outreach, as you said, and they're a captive population, much smaller in size than Ontario in geography, of course. I would say the Netherlands is around 71% or so. England is less than 60. It's 55% or so. Australia is even lower, 45% or so. Yeah, there's room for improvement, for sure, but Jill's right. In our case, because of this backdrop of opportunistic colonoscopy, the more relevant parameter is up to date-ness, what proportion of the target population is not up to date. Yeah, and that's been steadily improving over time, going down.
Mo Bucheeri
So question especially to Dr. Tinmouth, how would you say, besides the advances in the colon cancer screening program as a whole, you find any barriers that you as a gastroenterologist face in the screening and prevention program as a gastroenterologist, as a clinician, not as a person from the organization?
Dr. Jill Tinmouth
One of the big problems, I think, is the fact that we don't have strong organization of the endoscopy service, as Linda has called it like that. They call it in the UK, it's a service, right? So, we don't have a strong handle on that organization, and so that each practitioner, oftentimes is managing their own list, and that makes it difficult, both for the practitioner I’ll argue as well as for the patient, right? And for the family physician, who sometimes have to make six referrals before they can get a slot that they think is quick enough for their patient, but also from the point of view of the endoscopist, it can be quite anxiety provoking to have this list where you have, like, six months’ worth of referrals, and you've booked your endo full, and then you get a referral for a FIT positive patient, and where are you going to put them? Right so many places have sort of organized a separate system for their FIT patients, and we're doing that at Sunnybrook right now. So, we have we have a separate person who receives those, and we have reserve slots that we're using for FIT, and that's helped to solve the problem and sort of ensure that timeliness, and I think a lot of hospitals are doing that, but it still remains, I think, a bit of an issue.
And it sort of takes me to my second point, which is that I do think that, you know, as gastroenterologists, we're opinion leaders, family physicians look to us for guidance about what to do, and when we tell them, oh, you must do a colonoscopy for screening, we effectively are in some way, making that list longer, which is adding to our own anxiety. There's a very good test we have in Ontario. FIT is a very good test. It's comparable in effectiveness to many of our other screening tests, to mammography to Pap smear, not too far off, and better in some instances. And so we could do a lot to help ourselves, frankly, as a practitioner, by not doing these average risk screening colonoscopies, it would free up a lot of time on our lists, and then we could get the patients that have worrisome signs of cancer, positive screening tests or other diseases. We could get them done a lot faster. So, to me, that sort of like one of the things that I find particularly stressful is, just the way we deliver endoscopy right now. I don't think it's optimally organized for patients, for providers, and by providers, I mean, both family physicians and endoscopists, whom I think we get, there's a lot of anxiety from having very long lists.
Mo Bucheeri
Makes you wonder whether the reimbursement model in Ontario helps contribute to that, on whether choosing a colonoscopy versus a FIT screening test.
Dr. Jill Tinmouth
I mean, Mo, it's a great point, right? Because we still, like, in other provinces, you're not allowed to bill for average risk screening colonoscopy. You're not allowed to, it's just not an indication. Now, does that mean that people don't somehow slide in there. Yeah, that can happen, and people often make the argument, well, it doesn't stop, prevent people from doing if they don't, if they don't want to, and they use that as a reason to say, well, we shouldn't impose these sorts of restrictions. But one of the things I've learned, you know, in my role in Ontario Health and over the years, is that, again, it's sort of like that idea of like, don't let perfect be the enemy of good. When you put up a rule like that, or a restriction or a barrier or some gateways around, it does improve the situation. It's not going to be perfect. Yeah. So, people are still going to slide through, but you will see a reduction in the use of average risk screening colonoscopy if you don't allow people to bill for it.
Huaqi Li
Thank you. I think that was such a fruitful discussion. I think we covered how we got here to the colorectal cancer screening, what we've been doing, and kind of some food for thought, for steps moving forward. So, thanks so much for your time.
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