Evidence of meeting #31 for Health in the 41st Parliament, 1st session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.
A recording is available from Parliament.
President, Canadian Institutes of Health Research
I think I've already responded to that.
I believe we are doing the right thing. We're doing it as fast as we possibly can, and I realize that research is a slow process, and you know that as well as I do. We're doing that under the advice of experts in the field, from Canada, the U.S., and from other countries, and I certainly, like you, do hope that the results of the trial will prove positive for patients in this country.
Conservative
Colin Carrie Conservative Oshawa, ON
Madam Chair, I have a point of order. I wanted to correct the record, when my colleague started her statement, she did say that I asked about diagnostic imaging. I just wanted to clarify that I didn't ask Dr. Beaudet that question specifically. I asked him if there was any definitive test to diagnose CCSVI. I just want to make that clarification.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
I want to ask that this group review the latest information from the ISNVD, which is the group that looks at CCSVI. There is a consensus statement on the best way to image.
Conservative
The Chair Conservative Joy Smith
Order.
Dr. Duncan, we just need to go on and keep order. I know how passionate you are, but these are medical doctors here, and we need to listen very carefully to what they say.
We'll go to Mrs. Block now.
Conservative
Kelly Block Conservative Saskatoon—Rosetown—Biggar, SK
Thank you very much, Madam Chair.
I too want to welcome you here. It's always a pleasure to have you appear before the committee. I think your briefings to us are always full of excellent information.
I want to go back to a comment my colleague made about the anti-CCSVI campaign that's taken place, in her estimation. Certainly I would take some umbrage to a comment like that, because I think those of us who are questioning this therapy are doing it because we haven't precluded the outcome. We are willing to allow the researchers to do the work they need to do in order to ensure that this is evidence-based.
The Canadian Medical Association wrote a letter supporting the position that the majority of our members took yesterday on this issue. Could you explain why the CMA supports our position? Have you had that conversation?
President, Canadian Institutes of Health Research
Actually, I was cc'd on their letter, as you probably noticed, so I did see it.
I would summarize this in two points. We've already alluded to the first thing—
Conservative
The Chair Conservative Joy Smith
Excuse me. I'm sorry, Dr. Beaudet, but there's a point of order from Kirsty Duncan.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
I'm sorry to interrupt, but I have to address my colleague.
The implication there was that I'm not ready to...that I have made a foregone conclusion. I'm a former health professor, research—
Conservative
The Chair Conservative Joy Smith
Excuse me, Ms. Duncan, these are not points of order, these are debates.
Dr. Beaudet, would you go on, please.
President, Canadian Institutes of Health Research
Certainly.
Basically two points are made in this letter. The first thing is that, as was mentioned before, it would create a dangerous precedent to legislate on the type and object of research when we have mechanisms that have been set up by Parliament to do this on behalf of the Canadian public and the Canadian government. That's the first thing.
The second thing concerns more specifically CCSVI, which is that we must abide by the principle of clinical research, and get the information, as we're actually proceeding to get it, in a phased fashion.
Conservative
Kelly Block Conservative Saskatoon—Rosetown—Biggar, SK
Thank you.
I also want to go back to the MS monitoring system, which Ms. Elmslie spoke about, that was announced in March 2011.
I know my colleague asked whether or not we will be tracking all Canadians who have received the CCSVI treatment. I want to know if you can expand on why it is important to do this—first of all, to have the monitoring system, and second, why it may be important to ensure that we capture those individuals who have received the CCSVI.
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Thank you very much.
I'll start by saying that, as you know, the monitoring system is for all MS patients, including those who have chosen to have the CCSVI procedure, but not exclusive to those patients.
The reason it's important to have this monitoring system is that right now people with MS are going to a variety of clinics across the country for their care and treatment. Each of those clinics have different ways of collecting information on their patients, on the quality of life of their patients, on the types of treatment, and on their functions.
So we don't have, at this point, a national data system that allows us to understand what is happening to MS patients in this country in terms of improved function, disability, and quality of life. We also don't have a national data system, then, that allows for good information for doctors and for those who are responsible for planning services for these patients.
That's why this monitoring system is so important. It will unify, in a standard way, those data systems so that we have a large data system that we can use for a variety of different purposes—for research purposes, for understanding care, for looking at treatment patterns over time, and for looking at outcomes in these patients.
The CCSVI, of course, is very important to this dimension of the monitoring system, because it is one of the types of interventions that Canadian patients at this point in time are choosing to receive. We want to know more about what's happening to these patients, side effects as well as potential benefits.
Conservative
Kelly Block Conservative Saskatoon—Rosetown—Biggar, SK
Can I just make one comment in response? I don't know how much time I have, but I commend you for putting in place or developing this monitoring system, certainly with Canada being one of the countries, if not the country, with the highest incidence of MS. It's very important for us to do this.
Can you speak to the fact that this is going to be voluntary and to the implications it is going to have on our being able to have a robust data system?
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Yes. It will be a voluntary system, which means that at the clinic level, there will be a choice made by MS clinics about whether they will participate. At the patient level, there will also be a decision about whether they would want their anonymous information—so no personal identifiers—included in the national system. Of course, that is the way we operate in this country. We provide free consent to individuals as to whether they wish to participate in these types of ventures or not.
There's a huge interest when we look around the world and in Canada among people living with various neurological conditions, not just with MS, about being part of these types of monitoring systems, because they understand the benefit not only to themselves but also to Canadians at large. So we're quite confident that once patients with MS understand what this is, understand their right not to participate or their right to stop their participation at any time, they will be very receptive to participation in the monitoring system.
If I have just two more seconds, I'll say that when I talked about the national population health study of neurological conditions, one of the major parts of that study is talking to patients. One of the major advantages of this study will be that it's the first time we're learning directly from talking to patients about their experiences with neurological conditions, and they love participating in that part of the study.
Conservative
The Chair Conservative Joy Smith
Thank you, Ms. Elmslie.
We're now going to our five-minute round, five-minute questions and answers.
I want to welcome Mr. Harris. Welcome to our committee. It's nice to have you here.
Jack Harris NDP St. John's East, NL
Thank you, Chair, and I'm happy to be here.
I was very interested in the presentations, and thank you for them.
I'm going to change the topic a little, although we've been talking about MS for quite a bit.
I note in your presentation something that seems startling to me, Ms. Elmslie, that there are 160,000 people in Canada living with epilepsy, which is 3 times the number of MS patients—not that it matters. I don't know whether that's high or low, frankly, but what startles me is that your evidence was that the number of people with epilepsy is growing by almost 15,000 per year, which is a rate of 10% and strikes me as somewhat alarming.
Can you offer any more information on that fact, that statistic? Does anyone know why this is happening, what it means, or whether we're just getting better information?
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Well, it's a very good question and comment.
In fact, that's precisely why we are working with Neurological Health Charities Canada to undertake the Canadian study. We need to understand whether we are seeing better reporting of neurological conditions and that's driving up the numbers, or whether there are other underlying factors that we don't know about right now that are influencing rates of neurological conditions.
Unfortunately, we do not have good data in this country yet on many of these conditions. Therefore it's hard to answer the question you're asking, but we do need to answer it. We will know. We will have the answer to that question as the study finishes in 2013.
NDP
Jack Harris NDP St. John's East, NL
That even gives rise to other questions. I don't hear any alarm bells going off about that. Should I? How is it that we're only now figuring these sorts of things out? Call me naive, but I know the Canadian Institute for Health Information has been around for a while. Is that who's doing this study, or is someone else doing it? Do we have a problem in coordination of health information throughout the country, in part because of our system? Is there something we need to do as a federal government to enhance the availability of this data? After all, it's extremely crucial to population health, if you want to use that term. How is it that CIHI is not doing this? Have we got cross-purposes going on?
Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
No, we don't. There is a great deal of data collection that's being coordinated through the Canadian Institute for Health Information, largely around health services data and population health data—but largely health services data. That tends to be a focus of their work, as they're informing the health system writ large on ways to improve the organization and the care that is provided.