2016 Lyme disease conference breakout session 1: surveillance discussion/next steps part 1

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 3: Tuesday May 17, 2016, Rideau Falls room

Audio Recording


Nick: [00:00]

… number of tick species capable of transferring Borrelia

Alain: Right.

Nick: … and other tick-transmitted diseases. But I think there's more-the complexity about strains and species.

Ryus: (Inaudible).

Alain: Okay, hang on. Yeah, let's toss the microphone. No let's not do that.

Ryus: (Inaudible).

Alain: Hang on, hang on, Ryus. Take that one.

Ryus: [00:24]

Just on top of just the different species of Borrelia, I think you have to look at the different species of the co-infection, different species of Babesia as well.

Alain: Yeah. And my apologies because we struggled with assembling that over the course of the morning and last night. I'm also working with Mary Ann. Could you just wave at us, Mary Ann. If you turn your head back, Mary Ann is taking copious notes back there and we kind of get together and write up the quick summary, and it is imperfect and there's a recognition of that. We have our own filters as well and we can't include everything in the final result. By they way, we will struggle with that from this morning as well because we will be bringing back this morning's conversation, back to plenary at one. I can tell you that the lunch hour will be mad for both Mary Ann and I. So apologies in advance if it's not complete until (inaudible). Yes, Meg.

Meg: [01:21]

Yes, Meg Sears. I wasn't here for all of yesterday afternoon, so I apologize, but one thing I'd sort of expected to come forward that you didn't mention was where the vets are in all of this. The veterinarians in my experience are years ahead of detection of Lyme. That was certainly the case in the area where I live. I was the first person to send the ticks, but the vets have been diagnosing Lyme in dogs for years. And at the same time, the doctors say, "Well we haven't had a lot reported and so therefore you can't have Lyme," because I had actually a rash that was-and I sought the drugs and got them and were(?) okay. But with the surveillance thing, you end up in this catch 22 thing.

Alain: Yeah. And one of the case speakers yesterday-I know she's here, she's not in the room quite yet. Vett Lloyd from Mount A made a great presentation on her favourite subjects, which is dogs and Lyme disease and everything else. And somebody had a brilliant idea of training dogs …

Female: That was me.

Alain: … to go running through the woods. And, you know, the image of that I have in my head is a short-haired Yorkie terrier, white, running through the woods-sorry, that's just my warped sense of humour. But it's a really-there are ways to do that. I think that …

Meg: Actually, I spoke to Robbin, who's the fellow-Canada's Lyme-tick man in Winnipeg. And he did his PhD at Point Pelee with a dog to collect ticks. He would get hundreds of ticks off his dog every day. Some of them had Lyme and the dog was always fine. He never had any problem with his dogs because of the …But dogs are used in research for that, but the vets are literally years away. So…

Alain: Meg Sears, pleased to introduce Vett Lloyd. Alright, was there anything else in terms of this morning's presentation in plenary that I may not have characterized adequately? Nick?

Nick: Do you want Matt and I to run around with the mics?

Alain: You know, that would be just fabulous. I'd really appreciate that. It would make this so much more fluid. Thank you.

Male: [03:34]

We did speak about the issues of EM rashes being reported. And I know there was the issue about some of the grey area and the confusion of the different appearances of the rash. But I think 100% of clinically-confirmed EM rashes should be reported.

Alain: Okay. Alright. Okay, just to set the stage for this morning's conversation, in the next two and a quarter hours-two hours, because we're going to take a 15-minute break-there are three questions that I'd like to spend some time on, contrary to what Danielle said in the main room a moment ago. Question number one, I want to do this very briefly. But I would like to take a moment and a pause and ask, are there any other points to raise with regards to the current state of surveillance? Because yesterday that's pretty much what we talked about and I just want to close that door. Are there any additional points that have not been raised today that speak to the current state of surveillance? So that's question one. Hang on, I'll get you in a moment, okay? I'm almost there, just want to explain the three questions.

The second question is, and we talked about this yesterday already and we started poking at this very much over the course of the afternoon, is, let's talk about what success looks like in terms of a surveillance system and our surveillance effort. So in other words, I don't want to use it but I will, the vision word. What is it we aspire to have? Let's talk about the end state that we would like to create. So that's question number two.

Question number three will happen after we take a break. I'd like to take about 45 minutes. I'm ambitious; take about 45 minutes to get through these two questions. Take a break, and when we come back from break we'll go to question number three, which is the "so what, now what" question, alright? Which is what needs to be done, what needs to happen for us to get there? Get there meaning to that desired state that we talked about in question number two. Framed slightly differently, but it's the same question fundamentally, is what we are harvesting here, is your ideas for consideration in the framework, alright? That's what we'd like to hear and pick up, probably in the last hour and a half of our conversation this morning. That's the intent of what we'd like to do in the next two some odd hours, okay? Is it OK for this? And I need language here, (inaudible) non-verbal language. Is this okay as an agenda? This means, "Yes," this means, "No," and going side to side like this is, "I'm not sure," okay?

Male: [06:22]

There was mentioned yesterday of what-sorry, not yesterday, just now. But of the need for what-what do we need to do right now? What do we need to do urgently?

Alain: So I would hope that that comes up in the third question, alright? So as we're exploring some of the ideas, I would encourage you to think in terms of things that can be done on a short term, like almost tout de suite, as we'd say en Francais, or in the medium term or in the longer term. Okay? So keep that in mind. But that's for question three; we'll get there in a moment. For those that are joining us on WebEx, for each of those questions, at a certain point in time, I will pause. And I will ask if there is any input from those of you that are joining us on WebEx. So if you're standing in front of your computer at this point, I hope you've noted the questions, which are: current state, is there anything else that needs to be said to characterize the current state of surveillance today? Question two, what does success look like in terms of a surveillance system in Canada for us for Lyme disease? What's the desired end state, in other words? And question three, what is it that we need to do to get there? So those are the three questions. I hope the folks on WebEx have managed to capture that. I will pause at some points to hear if there is any input that you would like to add. Let's start with question one. So, anything else that we need to raise that characterizes surveillance today-and there's a whole bunch of hands that went up in that corner. So please, over to you.

Felix: [07:53]

My name is Felix Sperling. I'm an entomologist and a geneticist. I haven't spoken up much. But a point I made privately to some of the people was that surveillance is always a moving target. It was addressed how much of a moving target it was geographically, but it's also very much a moving target technologically. So state of the art five years ago is yesterday's inadequate science today. And so when we're talking current, we need to look forward and we need to consider that the technologies for surveillance that exist right now and that are just available right now continue to be implemented as quickly as they can be. So for example, the definition of what is Lyme disease was very limited by the technologies, limited to a particular Borrelia and so on and so forth. It is now possible to relatively easily, much more easily than before, characterize the whole mess all at once, relatively inexpensively. And so when you set up the surveillance for the future, it has to have a sort of a continuing, updating component that uses the best technologies that we know are out there, and they're not being used.

Alain: Perfect, thank you.

Female: Can you give us an example of which technology (inaudible)?

Felix: Sure. Next …

Alain: Could you repeat the question?

Female: Oh, I just asked if he could give us some examples of some of these technologies.

Felix: Sure. Next generation sequencing allows you to sample the entire or a very large proportion of the whole, so-called, microbiome, which is the community of bacteria. So in fact, you can sample certainly all of the Borrelia as well as a significant proportion of the other bacteria that are there, all in one shot. It requires some bioinformatics, in other words, some programming that is a little bit a work in progress right now, but next year it'll be so much easier. It's a very fast-moving area. And so for-and I'll give you some real numbers-for about $30 per sample, you can know 100 different bacterial species that are in a particular tick. And you can get that information in a day or two of course, if you don't count the cost of labour, which is much higher. So that's an example. Now the way in which that was possible three years ago was you look at 200 base pair of DNA markers or-now its 400 is quite easy. But guess what? This year it's now thousands of base pairs, and you can look at multiple markers. And the programming to connect different markers is being worked on right now. And that's another really important thing, is single markers, one marker is not enough. Single markers always give you a subset of the information you're interested in, so we now have technologies to look at multiple markers simultaneously.

Alain: Alright, good. Thank you. There's another hand raised behind you. If you just hand the microphone over there, and I'll come to you, Holly, in a moment.

Male: [11:12]

I collect ticks for Janet. So my question would be-it comes from a consumer reports magazine. They show in their data, like, for (inaudible) reliability and so on, parts are blank and they have the symbol in there, "Data unreliable, too little data." We need that on our surveillance maps too. What is really well known and where there is insufficient data, just because it's blank on the map means that there's too few of us-my knees are starting to wear out and so are my feet-to go to these neighbourhoods and find out. I'm finding enough in my own neighbourhood, the golf course, you know, within couple miles, keep finding these hot zones and then step over in the neighbouring field, find no ticks. So what kind of areas are we talking about? That's probably community district. It's very difficult; it's kind of a moving target. (Inaudible) for these two is another one. This is a pandemic; somehow we're going to have to face this. We had disclosure on sale of real estate; your home had to be inspected for UV foam, if you remember that scandal. Well at some point with real estate, that property is going to have to be certified as being, you know, low-risk, high-risk. That's not very nice, but the legal people are going to have to catch up with that at some point, because I'm dealing with some (inaudible) collecting off(?) our property, just bought that property, and she's got Lyme disease.

Alain: Alright, can we take the microphone over here please? Couple of other points and then we're going to keep rolling and we're going to go to the WebEx folks. So please make your points brief and we're focusing on the current state, today, of surveillance. Initial points, Holly.

Holly: [12:50]

First I would like to apologize. I didn't get the whole of the session yesterday; I had to leave early. But, you know, working with epidemiologists and entomologists and other statisticians, mathematicians, the question of surveillance is always the most difficult one. And one of the most, I think, innovative ideas that has come out, because making out a quadrant, for example, of just a national park like Gatineau Park just north of here, and testing and counting ticks in each quadrant could take one researcher an entire lifetime, and at only at one point in time. It's just-old technology is not feasible.

But one of the most innovative things that I've heard discussed and found to be useful, it's in the published research, is to create a portal where people are self-reporting tick encounters. It was used for the flu. Public Health Canada, as far as I know, was using a surveillance system. It was 24 hours a day. Please correct me, anyone in the room, if I'm incorrect. We were doing the research at the University of Ottawa and I was not directly involved. So people were self-reporting, people were monitoring headlines around the world and in local communities, which are often overlooked, the little tiny newspapers. So doing constant searches, creating that portal where people can say, "Hey, I had a tick encounter," or, "Hey, you know, I pulled ten ticks off my dog."

"Hey, I was diagnosed with Lyme." All of those things matter and they don't tell us, you know, per se, what's happening in a community, but what it does do is it allows us to identify hot spots where research can be directed.

Male: [14:33]

Can I just respond back? Because you're quite right, you can't do-drag sample the whole of Canada. And not only can you not drag sample the whole of Canada once, you certainly can't do it every month and every year and so on. So we're going to have to think about understanding environmental risk and how it's changing. We're going to have to use-I mean, that's ultimately the objective of the passive surveillance at the moment that we've been using. But yes, those kind of citizen-based reporting systems are kind of, like, for the future and also the idea that even then those are only going to happen where people are and you need to extrapolate from those areas to places where people rarely go but may encounter risk using risk-modeling approaches. So, in other words, you know, your ultimate understanding of where the risk is will have to be a combination of those, but validated (inaudible).

Holly: I'd like to just...

Alain: I'd like to carry on in a moment quickly, Holly.

Holly: Just to come back and say, you know, yesterday we heard a lot about a lack of resources to do research and there are 200, 300 people just here on site, many of them patients and advocates who are willing to give their time and their money and their willing resources. They are citizen scientists. We're here, okay?

Alain: Alright, so, by the way, just-I want to make a point of order here. You've now gone into question number two. Because you're talking about the future, leveraging citizen reporting, portal, you're talking about, you know, finding out where data is missing, indicating where data is missing. That's okay, alright? So let's continue on that path. Who's got the mic at this point? I would really appreciate your interventions be fairly quick and succinct.

Female: I'll just go back to yesterday regarding what is being done in Canada.

Alain: Yes.

Female: I think we did not have a chance, in Quebec, to specify, but there is also of course human surveillance in Quebec as well as active surveillance of ticks and passive surveillance there for the animals. So there is a small team there from INSPQ conducting surveillance. This was in response to a question that was raised yesterday.

Alain: Oh, this is something that is being done currently?

Female: Actually, yes.

Alain: Okay. Excellent, thank you. Can I just-quickly let's move the microphone over here. I'll try to get to everyone.

Howard: [16:50]

I'm Howard Shapiro, Toronto Public Health, and my issue has to do with the way I guess the tick surveillance data is represented into risk areas and endemic areas. I think the endemic areas, and I realize this is a very hard set of information to portray, but I think the endemic areas are almost like little triangles, very precisely located. I think that's really a product of where the actual studies have been done in terms of intensive dragging and small mammal tracking. And it gives the impression that if it, you know, that areas outside of those small triangles aren't endemic areas and they're labelled as risk areas. But I'm pretty confident if you went into those other places and did those types of studies, you would find the criteria that you need for endemic areas.

Male: [17:40]

I'll just add to that. That's because on the (inaudible) website we've got these little triangles that show areas and risk areas, and we're kind of trying to move away from that endemic area thing. But that's around the surveillance case definition at the moment, which we're also changing and making it sort of environmental risk rather than endemic area, because it's just too complicated. So that will go, you're right. So, you know, getting towards a risk surface is going to be a much more meaningful way to go.

Alain: Alright, go ahead.

Craig: [18:11]

Thanks. My name is Craig Stephen with the Canadian Wildlife Health Cooperative, and I want to go to your first question today about current state. Much of the interesting-much of the discussion yesterday was about ticks and environmental sources as opposed to human surveillance. And I wanted people to know that there is this thing called the Canadian Wildlife Health Cooperative, which is Canada's national wildlife health program. We're disseminated across Canada. We examine 10,000 animals a year, including looking for a variety of tick-borne diseases and vector-borne diseases. We're currently trying to develop a national wildlife health strategy that will save this capacity, and in fact if you want to have a group which has world class diagnostics, has these animals, you already have an infrastructure there and the expertise, and that you need a couple to develop that program with any capacity to see not only vector-borne diseases where they currently are, but at their edges of their distribution. So you have that capacity at hand that we need to continue to support so we can deliver on that program.

To the earlier point about dogs and other animals, I think we have to remember that it'll vary by provinces but generally these aren't reportable diseases in animals, so there'll be no obligation for veterinarians to provide that information to anybody who tracks them. British Columbia is trying to roll out a zoonotic disease legislation where they can track them. So there isn't that capacity to capture it on a routine basis.

Just one other thing, perhaps you can clarify maybe as we're going forward, when we're talking about surveillance, I think it's important to distinguish which surveillance of ongoing monitoring, assessment and communication from periodic surveys to monitoring, which is we look in the summer as in once a year. And then we have to ask ourselves, "Are we developing a system that's tracking weather and environmental conditions, vector biology, the variety of pathogens and vectors-it's not just bacteria, it's not just viruses, it's not just one type-human acute disease and human chronic disease?" I mean, as we go forward, I think, having an understanding of that spectrum, it'll be important so that we can talk about-because there's a lot more happening in Canada right now than we've talked about today and we're starting to get environmental information as well.

Alain: Okay, thank you. Please go ahead.

Patrick: [20:20]

Hi, Patrick Leighton. I'm a professor at the University of Montreal. I've worked a number of years in the Public Health Agency doing the active tick surveillance as well as the Quebec Public Health (inaudible) mentioned earlier. I'd just like to jump on something that Craig brought up and that Nick brought up yesterday, and this is about the current state of surveillance, and I think it's a very important distinction. Much of the surveillance that's gone on to date has been to confirm the presence of ticks in different areas and has been done in a way that is slightly different from one area to another and it often has been essentially chasing a smoking gun. "We have a signal here, let's go confirm it." What that doesn't give you is the ability to track something over time, and I think that's where it comes to the notion of monitoring and having a long-term signal of what's going on, its prevalence increasing in areas that we consider representative. Not just are the ticks established, but what's happening on a longer term. So that's something that I think is lacking currently in our surveillance and that really needs to be thought about as an important component of the surveillance program going forward, that allow us to have comparable data over time that allows us to track change in areas that we now know have an endemic Lyme issue. Nick.

Alain: Alright.

Nick: Can I just summarize that a little bit? Do you mean that we need surveillance that is happening systemically in space and time?

Patrick: Absolutely.

Stephanie: [22:00]

My name is Stephanie Smith, and getting back to surveillance of whether it's reported by doctors and that paperwork getting filtered up, I think we also need to understand the barriers of patients even getting in to see doctors. So for example, if a patient has suspected Bartonella, AIDS doctors are some of the best that have experience and pay a lot of patients with Bartonella. You can't get into those clinics like the Maple Leaf Clinic unless you've got AIDS. My last rejection was from a Toronto specialist for co-infections to be seen unless I provided Ontario positive Lyme serology. The referral was not for Lyme disease; the referral was for co-infections. So when we're looking at Lyme-when is Lyme not Lyme? It's co-infections. So that has to also be somewhere on the data.

Alain: Okay. Yeah.

Vett: [23:12]

This is Vett Lloyd. I'm just going to make a brief point of information. With canine surveillance, it isn't reportable in the same sense that human cases are reportable. It's voluntary reporting, but it's very strongly driven by the fact that if you're buying these point-of-care kits, which are reasonably expensive, you get a 50% discount on your next one. So compliance is actually remarkably high when you use that kind of (inaudible). So the canine data is quite good.

Alain: Thank you, Vett. I'm going to move to second question, but if you insist on going to first, we're okay with that too. Matt, can we get a microphone over there, I'm going to privilege those of you that haven't had a chance to speak yet. So Holly, we'll get back to you in a moment. Go ahead.

Male: [23:59]

Okay, very quickly, as a tick biologist, we have to recognize that when you find a hot spot, that's not a hot spot forever. And that having to do with the biology of ticks, bunches of ticks are going to be dropped somewhere, and so you may catch them and say, "Oh, this is a hot spot." But when they get on a host and stay for days, you don't know where they're going to be dropped next. And so it's really important to recognize that ticks do not appear randomly in the same area as they're constantly shifting where they are.

Alain: So the by-line on that is, "Hot spots cool off," that's what I wrote. How's that for witticism?

Male: You can quote me on that.

Alain: Alright. Holly?

Holly: [24:40]

Please correct me if this was not mentioned yesterday. What we've noticed in the research in the south and in other places in the world concerning other tick-borne infections is that, for example, the blacklegged tick, its pattern and its activity and the way that it transmits the disease is completely different in Florida. In fact, it doesn't prefer the white-footed mouse or the deer; it prefers tortoises and lizards and snakes. So when the researches went out to collect white-feeted [sic] mouse and to collect deer, which are really small, cute little things in Florida-they're not huge like they are here in Canada-they were finding very little evidence of tick activity. So when we are considering surveillance, we need to think outside the box and not just be looking at them in alien(?) or avian(?) population. We need to be thinking about the many eco-regions of Canada and how they change across time and space.

Alain: Okay, thank you. I'm going to go to WebEx. Roseanne (operator), if we're ready to go to the Webex operator and ask if we've got any participants joining us on WebEx whether they would like to add any points on current state of surveillance today or for that matter, start the conversation about what's the desired end state, future state, of surveillance in Canada.

Operator: [26:09]

Thank you. If you have a question or comment, please press star one on your telephone keypad. There will be a brief pause as(?) the participations register. And we have a question from a participant. Please state your name and follow up with your comment.

Doris: [26:24]

Yes, I'm Doris Owen and I'm from B.C., and I would like to comment on the fact that I believe in B.C., vets have been told not to submit ticks, that they are quite satisfied with their.5 infection rate. I then believe that we need Health Canada to do surveillance in B.C.

Alain: Alright, thank you very much. Noted.

Male: Just one comment about that.

Alain: Very quickly.

Male: Health Canada is the regulatory organization and the Public Health Organization is the public agency of Canada.

Alain: Thank you for that clarity.

Male: I know it's-a lot of people get the two mixed up.

Alain: Absolutely. Is there additional comments from those joining us on WebEx?

Operator: There are no further comments at this time.

Alain: Okay, thank you. Let's go to Natasha just before we transit to the next question. Go ahead.

Natasha: [27:25]

Very brief comment. Talking about surveillance, you mean tick in general or you mean blacklegged ticks specifically? Because if we go to question, Ixodes scapularis in Florida, there is another tick species called Ixodes athenis(?) that look very much like Ixodes scapularis. And if you're not a specialist, if you're not a tick taxonomist, you will miss it. So it's, like, you can place Ixodes scapularis, definitely. But you might miss those maintenance vectors that I mentioned yesterday. It's, like, think widely and think wisely. It will definitely help.

Male: [28:05]

I think that speaks to count of fields. The validation in the field. We've actually looked quite hard for other species, angustus murashige and so on, that might be actually acting as (inaudible) and really haven't found any as yet. So, I mean, we have been looking. Just-I just have one comment about the surveillance. We're talking very much about understanding environmental risk and I think that it's really important to do that. I mean, that's what has been the primary focus for a lot of our surveillance. But we're not talking about human case surveillance as yet. So, I don't know-and I do think that we need to be doing human case surveillance and for perhaps in a number of ways, just in terms of identifying those kind of high bar criteria cases. "Oh yes, you have a classic Lyme disease case," and all the rest of it. Whether we include EM in that or not, that's kind of, like, possibly semantics.

But the other is that sort of other category of individual who has acquired some kind of illness. They test negative with the current kind of CDC thing and then they have Bavaria. They've got something. What is it? How should we be tracking that? And should we be trying to understand more of what the difference is for whatever? Whether that's an epidemiological study, and I think it probably is, and quite a big epidemiological study, and it's probably going to be addressed somewhere else, but ultimately we should, I think, be aiming to intervene and be doing some kind of surveillance for that which monitors how well we're doing at reducing those (inaudible). But maybe that's-that's really long-term future, yeah.

Alain: Yeah. Okay, so I'm going to transit to the second question, what does success look like with respect to surveillance? I note that you're up on first; I'll come to you in a moment, Jade. Because we've already started poking at that question around, what does success look like? Yesterday somebody in this room said, "We need systematic surveillance in all provinces." And that was a message that I repeated during the plenary a moment ago this morning. I also heard this morning from our conversation-oops-on the need to leverage technology and emerging technology because surveillance is a moving target and the technology available to us is also a moving target; we need to leverage it. So I would call those two elements of a desired end state, okay? Two elements of what success looks like with respect to surveillance in the future. What other elements do we have? Jade, over to you.

Jade: [31:09]

I'm Jade Savage. I'm a professor at Bishops University. Someone's mentioned tick encounter before. I'm part of a group that has initiated a very similar initiative called ETICK, and the goal is to rely on citizen scientists to provide pictures that would then be identified by people with the taxonomic skills. And this is a way to engage everybody, keeping people invested. But also this is a way of gathering repeated longitudinal data that is accessible not just to the public, but accessible to anybody, because this is open data. It's possible we need provincial partners. Right now this is only in the province of Quebec. But I can see this moving beyond what it currently is and it is the simple, social media initiative. It works, so I'm hoping that as we move along, we will be able to rely on this group to gather some momentum to get people to contribute picture and know that their data is not disappearing in a black box somewhere, that it is there, and that it can be pursued and monitored, especially when we speak of hot spots, to see what happens year after year after year and if there's a dissemination or a transfer or anything. So I believe these ways to rely on everybody instead of just a handful of scientists with limited resources is a way to gather additional data. So just wanted to mention that.

Alain: Great point. Thank you, Jade. Yes.

Stephanie: [32:54]

Stephanie Smith again. Just to reiterate my suggestion yesterday, finding out what worked in other regions. The doctor Hassler in University of Heidelberg, how he was able to reduce infection rates. So what did he do for surveillance? Look at what endemic areas in other parts of the world were able to do and see if we can build on that.

Alain: Alright.

Nick: [33:22]

Just as a high level comment, the two possible kind of objectives of the success stories that we adequately or that we've well described in Canada, what the environmental risk is from Lyme disease and other emerging tick-borne diseases. So that's understanding the environmental risk, as a high level objective. And that will allow people to know where the risk is and to act upon that and for medical practitioners to know where the risk is and so on. The other …

Alain: When you say environmental risk, can you characterize that a little more precisely?

Nick: Yeah, basically it is the where in the environment, the amount of risk of acquiring an infection. And that could be, kind of, you could actually do it in a real hard risk analysis way, which is sort of, you know, quantitatively. The other objective should be towards better identifying who is getting sick from these infections, how many people are getting sick and ultimately what is the success of our interventions, because following the numbers of human cases we'll know how well we're doing with our messaging, how well we're doing with people protecting themselves, doing whatever control method we may in the future need. So …

Alain: Okay. Good. Madame?

Female: So I wanted to know, I saw that...

Alain: Would you please place the microphone directly in front of your mouth, Ma'am?

Female: There was a representative from Bishop's University and in the back I thought I saw, I guess...

Alain: Once more in the microphone. We didn't hear you.

Female: Sorry. I'm not used to it. I'm actually nervous. And I am speaking for Quebec. We have McGill University which is in Saint-Hilaire and it seems that they are doing studies. I wanted to know if there are any representatives here from Bishop's University, uh, McGill. Because they are doing big research. In Saint-Hilaire, on Mont Saint-Hilaire, there are a lot of ticks it seems. But there are no signs saying that there are.

Alain: So no warning that [inaudible]...

Female: No warning. Then they did a show, Découverte,

Alain: Okay.

Female: On Sunday. And we are certain that there are ticks in Mont-Saint-Hilaire and many ticks on Mont Saint-Hilaire. They are taking [inaudible],

Alain: Yes.

Female: As you saw yesterday, then they go on... So I would like...

Alain: Did you ask the members of the INSPQ behind to just answer this question?

Female: Make them aware, I'm asking myself.

Ariane: Yes. Hello, my name is Ariane, so I work for the Institut national de santé publique du Québec and I am - one of my mandates is to conduct surveillance for Quebec. So I also work with the University of Montreal who are doing some - drag sampling, so who go and collect ticks in the field. There are here, in [inaudible], so Karine Thivierge who is at Quebec's public health laboratory doing - in charge of passive surveillance.

At Mont Saint-Hilaire specifically, I know that the University of Montreal collected ticks for several consecutive years so I'll let Patrick Leighton, here to my right, talk about the results.

Patrick: Yes. Well I think that's a good point. There is - the risk is not homogeneous all over. So I do not want to speak specifically for Mont Saint-Hilaire. Of course we monitored and in fact there was some misinformation in relation to this in particular; this is not the epicentre of the emergence of Lyme disease in Quebec. But what must be known is that there are many variations within Quebec as well as emerging areas, so where there are a lot of ticks and few ticks. And I think that in collaboration with McGill, in fact, there are other researchers at McGill who also contributed to these surveillance efforts in the past and they continue.

We continue to have a better idea of​ where the hot spots are, as he said, the hot spots and the colder spots in the regional areas. So I think it comes back to the point that even if a place like Saint-Hilaire has few ticks in the park, in the vicinity there may be many and the risk will change. And it is important for the public to know.

Female: Well that's it.

Patrick: That in time we have to continue to monitor to see when it will go back up. There are other parks in Quebec, not to name them, where there was almost nothing 10 years ago and now there are a lot of ticks. That means that we really have to go back and keep an eye on them because these are the places where people will be exposed.

Female: Yes. Because Mont Saint-Hilaire, people go in - go there a lot.

Ariane: I might finish: in fact, we have been going and collecting ticks in public parks, in Quebec clearly, for two years, so we produce a lot of data from the collections too. We are talking with the Ministère de la Santé. They have information sheets so we suggest that parks also install information sheets at the entrance for visitors.

So there was a lot of work to do but we are progressing. We are progressing gradually.

Female: That's it.

Alain: We are overlapping and we're starting to slightly flow over into the issue of awareness and education, which is another topic that my colleague Kathleen is currently exploring.

I would like to take you back to the question of what the vision of a surveillance system looks like. What does success look like with respect to surveillance? Go ahead.

Male: [39:05]

Okay, I want to do two things: one for the tick surveillance, this is the ideal state we're talking about. There's a lot of dragging going on, I think, at least in Ontario. So it would be great if somehow that information was collected and made available to the public in one specific place where people could see where, for instance, tick dragging has been done and it's been negative; where tick dragging has been done and the number of ticks collected, how many tested positive, sort of an ideal state. On the human side, which I agree is very important, being from our local health department, physicians are already required by law to report Lyme disease, at least in Ontario. They're required to report-I don't know, about 70 different things. They never do, and that includes things like meningitis or tuberculosis. The only way reports come in is through the labs: when somebody has a lab test and it's positive, that's reported. So I don't think that's a realistic expectation even though it'd be great if physicians did report rashes. You're probably better off looking at some sort of sentinel system maybe in an endemic area where there's a specialty clinic or something where you could actually get people and maybe follow them prospectively for some of the other things that we're concerned about more in the long term.

Alain: Alright, thank you.

Nick: Could I just ask a question about that? Which is, that if you have-sorry, Alain. Yeah, just to make a placeholder. But ideally the doctors would be, so how would we get there? That's another question.

Female: [40:40]

Okay, and so my concern is that I am well aware of the doctors who send me ticks so that I know that these are doctors who are having patients that are diagnosed with Lyme disease, they're getting the ticks, they're sending them to me. But these are the doctors who no longer report to the province of Alberta and they don't report anymore because they keep sending in-they keep getting positive C6 peptides and they get phone calls. And they're told, "You live in a non-endemic area; how come you keep sending in these positive C6? You have to recognize they're false positives." So the doctors have just chosen-and they just told me, they just said, "Okay, so I just treat. I don't test." They said it is too scary to test. So I think that's something else that has to be taken into account, that there is fear on the part of the doctors that when they do get a positive test result and they're in an area that is non-endemic, they are told, they're instructed not to treat that patient, because it's a false positive.

Alain: And there you go, is the definition of disincentive.

Female: Exactly, exactly.

Alain: Yeah. Great point, thank you.

Kami: [41:47]

Kami Harris, PhD student with ABC UPI at Mount Allison. I guess-we talked a lot about risks maps yesterday, and so a lot of risks maps from everybody are dots on a map. And I think success would really look like more of a topographical map, you know, something fluid where you have colours expanding into areas. So, for example, in New Brunswick, Millidgeville is an endemic area, and as you were saying, we're going to change the definitions of those things. But, you know, there's a dot on Millidgeville. But instead of a dot on Millidgeville, having a red area that expands out into pink for the St. John and Bay of Fundy area, those types of things where when physicians or public or whoever assess those maps, you're seeing more fluid and being, like, "Well I'm relatively close to this very red area, so we're going to kind of assess based on that."

Alain: So just that representation would be much more meaningful …

Kami: Than a dot.

Alain: … than a dot to fundamentally just laypeople like myself.

Kami: Yes.

Alain: Okay.

Female: I'd-if you don't …

Alain: Yeah.

Female: I'm sorry.

Female: [43:00]

I think that surveillance should be something that was both useful but not used inappropriately, and clearly our relying upon something that's as weak, in terms of evidence, as surveillance in, you know, something in the environment that's very tiny, containing microscopic infections, that's-using that for diagnostic purposes is totally inappropriate and that just has to go. Because in fact what we're doing is we're using people, like, you know …People should be part of the surveillance, and in fact people are being, you know, kind of left under the bus because they're, you know, being sort of sacrificed.

Alain: That information is being used inappropriately. Yeah.

Female: They're being sacri-yeah. Yeah, you know, a lack of information is being used to deny care, and then since care is denied then it's not part of a surveillance. So it's completely broken that way.

Alain: Boy, talk about a catch 22.

Female: So, yeah, exactly.

Alain: That's a perfect example of it.

Female: Yeah. You know, it's completely broken. It's completely backwards. But surveillance is something where-I agree totally, you have to recognize the limitations of what your information is, how many pixels you have on this picture. And so a realistic depiction of the level of information is very important. And something that I'm working on is what we're sort of loosely calling Environmental Health Information Infrastructure. And so this would be part of-the idea is that there are a lot of environmental things, be they pollutants or pesticides or the food quality or whatever, air quality, that contribute to people's health. And certainly vector-borne diseases, that's part of it. And all of this information should be collected in a systematic way so that it can be meshed with health records. Because we're getting it-they're working on de-identifying and making the health records compatible across the country.

So down the road, we want this to be able to plug into de-identified health records so that we can have markers within the health records that would identify a chronic disease that may be vector-borne, that kind of thing. So it would be useful down the road and even better is to have predictive value. Because right now, you know, chasing the smoking gun, that's important I suppose. But ideally we would be preventing rather than using the children getting lead poisoning as the indicator of lead in buildings and using people who are getting sick as indicators, "Well maybe we should go and check out ticks around there." And it is the kind of thing that we repeat time and time and time again. We have known risks and we chase them after the fact, after we've got indicators of disease.

Alain: Alright, thank you. Vett, and then I'm going to go to WebEx in a moment and we're going to take a break. I see a number of people waving at me, good morning. We'll try to get to you before we take a break. Go ahead.

Vett: [46:42]

Okay, I just want to follow up on both of those two previous comments. And there is actually a very quick thing we could do to improve, to solve-well, not solve, but at least help with the problem that these surveillance maps, which are a very powerful research tool but they're being misused. They're being misused to deny treatment, to deny diagnosis and to deny further research, and I can give you some very good examples of this positive feedback loop. We have, "There is no Lyme disease in this area." Let's pick New Brunswick for example. "Therefore we're not going to go look for ticks, then we're not going to find ticks," amazingly. Therefore there is no Lyme disease risk. And a very simple solution is to steal that disclaimer statement from PHO and put it on the maps that are on the Public Health Agency of Canada website, and at least that way it would help advertise that, you know, some sort of disclaimer, "This is for research purposes only, not for clinical diagnosis." That would help to some extent.

Alain: Thank you, Vett. Can I just-I don't know who's up next. So quickly, there's many hands going up and we need to take a break. Go ahead.

Female: [48:02]

Okay. I just want to say, I didn't see it written down that there is a fear factor that has to be removed. And we have to get rid of this fear factor around Lyme disease that doesn't exist around the flu or any number of other things. So that's part of what success looks like. Treating it …

Alain: But the point around fear was physician's fear of reporting.

Female: Physicians fear reporting, because this brings people down on them.

Alain: Okay, great point.

Male: [48:30]

I'm going to quickly add to that. There needs to be much greater transparency of what is being done. So transparency and immediacy will be enhanced if we can see who is holding back, what agency, provinces, what regions are actually not making their data available. There can be a social component to the enhancing compliance with transparency.

Alain: Alright, thank you.

Male: [48:58]

Yeah, so back to the, you know, kind of switching to more of a contour, risk map sort of thing, we've all heard over and over that there's nowhere technically that you have a 0% risk, so there should be nowhere in any of the provinces that are blank. They may be really low risk, but it should be solid across all of Canada, what risk level is. It may be 1%, it may be really low, but there should be no blank areas.

Nick: [49:23]

I think we do that already. I mean, we identify risk areas, but also, you know, it's textual to say that there is …

Alain: Okay, Holly.

Holly: [49:38]

Okay. I'd like to say that for me, successful surveillance system begins with a better case definition. I'd like to say something for and perhaps contrary to the CDC. Canada has based much of their Lyme surveillance on what has been happening in the United States, which has endemically and historically been the hot spot, the hot center for Lyme disease in the world. And I think Canada needs a Canadian case definition. And that case definition might look very different than a diagnostic case definition. I need a case definition for surveillance. I also think that we should be using technology and using data sets, you know, creating a data set of human cases so we can monitor it over time, overlay geographic information such as weather patterns and weather disturbances and other interesting events. But what we can also do with that is create maps that can show where the hot spots are, where their buffer areas are expected, expansion areas and areas where there may be low risk but we can't be certain. And we need to be careful to say, low risk does not mean no risk.

Alain: Okay, good. Jade.

Jade: [50:57]

Talking about ideal surveillance, of course it starts with ideal data. But once you have the data, ideal communication is also something we need. Because when I try to teach my students about the evolution of Lyme in Canada and I look at the different provincial websites, there's a huge discrepancy between how data is presented, how available it is. And at the federal level, it's not always easy to find-if you type 'Lyme disease Canada', you're not necessarily going to get the figures, and often I have to dig into the primary literature to find relevant figures. And if we compare with the data available for the U.S., which is updated regularly, this is something that I would like to see. So updated data, but available at a federal level that would give a better picture of the data from the provinces.

Alain: Okay. Thank you, Jade. I'm going to go to WebEx and our WebEx operator, find out if there's anybody that's following us on the WebEx that would like to add any comment relative to what success looks like vis a vis surveillance. Over to you.

Operator: [52:07]

Thank you. If you have a question or a comment, please press star one on your telephone key pad. And we have a comment from Doris Owen. Please go ahead.

Doris: [52:16]

Yes, I would like to comment on the fact that in B.C. our doctors are so uneducated that when they take a tick, they'll toss it in the garbage and say, "Oh, you're okay. We don't have Lyme here." Even in the emergency rooms they think that we don't have Lyme here. And that is-they definitely need to get educated to send in the ticks for testing.

Alain: Alright, so educated physicians to support surveillance efforts. Good point. Thank you.

Female: (Inaudible).

Alain: Hang on, hang on. Hang on, hang on. Is there anybody else on WebEx that would like to comment?

Operator: We have a comment from Brenda Sterling(?) (inaudible). Please go ahead.

Brenda: [53:09]

Ticks have been around for a long time and risk is risk. And I think they have to talk to the veterinarians for. There are many cases of Lyme in the animals, and if the animals get it so do the people and people who work with animals. Lyme is an occupational health and safety risk that is not being addressed and must be.

Alain: And your point-go ahead.

Brenda: And my point is the workers need to be educated and they have to be monitored. That would be a source of surveillance in the workplace. People getting ticks off themselves in the workplace, that might be another source for surveillance.

Alain: Perfect, thank you very much. Great input.

Brenda: Thank you.

Operator: Thank you. And the next question is from Donna Warren. Please go ahead.

Donna: [54:06]

Yes, good morning. I am wondering if it might be something to look into with surveillance in reporting data on blood types. Much like if you're sitting out in the backyard and even how a mosquito will kind of zone in to one person and leave somebody else alone, is there something about this with the ticks? Just curious, and especially with, you know, the blood banks and-and it's a little bit scary that blood transfusions are going on and things are not being checked into.

Alain: That's a great question and to which I wish we would have somebody from the Canadian Blood Agency to respond to. I don't know if there's anybody in the room here or anybody on WebEx that could respond to that. Nick?

Nick: [54:57]

Clearly the Canadian Blood Services Hema-Quebec have some fairly stringent criteria about what they do with blood collected from people. There isn't actually a kind of like an appropriate test to say, "Is this person kind of bacteremic or spirochetemic with Borrelia?" Because bear in mind that spirochetemia is usually kind of short-lived for Borrelia burgdorferi. And if you are spirochetemic (inaudible) you're likely to be sick. So if you're sick, so in the early phase of dissemination-and if you're sick, well you shouldn't be giving-the person should not be giving a blood transfusion. So for many other infections, there are actually tests that are undertaken to test whether the blood is suitable. But I think it's, you know, recognized that it is a source of transmission and they work hard at it.

Alain: Okay. I'm going to go back to WebEx. Is there anybody else joining us by WebEx? Operator?

Operator: There are no further comments at this point.

Alain: Alright. Messieurs-dames, here is what I'm going to suggest. We are going to take a short break and we are going to come back with the next question on-we've kind of defined what the desired end state is, so my question to you will be, what needs to happen? That's the next question that we need to start debating and articulating. So let's take 15 minutes, hopefully coffee is out there and there's refreshments. We'll see you in 15 minutes.

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