2016 Lyme disease conference breakout session 1: surveillance discussion/next steps part 2

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


Alain: [00:37]

We have precisely 65 minutes left this morning for the big question, which is, what needs to happen to get to the state that we've kind of described? I didn't take time to summarize it, but I've hung it on the wall from my flip chart notes, the five pages that I've kind of posted up on the wall there, if you can get by my cryptic notation. There are three flip charts there that speak to various elements or various facets of a desired end state with respect to surveillance in Canada. So the question now is, what needs to happen to get there? One of the couple of ideas-there's already been a couple of ideas that have surfaced, and one of them was around the notion that these risk maps are being utilized inappropriately, so perhaps we should make a disclaimer.

A second one, which is not up here yet, was all around the fact that these heat maps are kind of binary in the sense that it's a point on a map, it's a dot on a map, but it doesn't show the surrounding risks. So the notion was perhaps that map should look more like un relief topographique, as we'd say in French, or topographical map, to show the risk may be concentrated in one area, but there is risk around it as well that may need decreasing. The other element was that there is no such thing as zero risk. There may be low risk, but it doesn't mean that that's no risk. And somebody, and I don't know who, but slipped me a note that said-I put a comment down and saying, "Hot spots cool down," meaning the whole notion that the risk moves over time, and the comment was, "Alain, cool spots heat up." Alright, noted. Got it, and that's absolutely true. So …

Male: (Inaudible).

Alain: Precisely. No 0% risk is prevalent. Okay, so the question is for you, so what do we need to do to get there?

Male: I think …

Alain: Just make sure it's on.

Male: [03:12]

I think what needs to be talked about here to get there that isn't there sufficiently yet, is there needs to be patient representation on a lot of the development of sampling, surveying and so on, protocols. I'm speaking as both a scientist and as a patient advocate, you might say, and I see both sides of the fence. And I see a huge amount of frustration due to a lack of transparency that sometimes puzzles me and this is actually a failing on our system in taking advantage of a resource of people who can be enormously helpful in developing better surveillance. So that's what needs to happen to get there.

Alain: Perfect, great point. Okay, other points. Jade, please.

Jade: [04:10]

This is a federal meeting and we've been talking a lot about money and resources, and so part of that money is going to have to be federal funds. And so I think what needs to happen is to open discussion with the tri-counsel to open a special call for research projects in the short term. So not wait another decade, but put something together rapidly through them.

Alain: So a special call for funding for research.

Kami: [04:43]

And to just tag on to that point, right now, immediately, there can be literally one master student do a meta analysis and pick up Dr. Lloyd's data, Dr. Sperling's data, and put it immediately on a map, and that can happen very quickly, within months. And so I think that's something that's an immediate thing. It's not necessarily a long-term thing, but certainly could be utilized long-term as well.

Alain: So the idea here, just to make sure I've got it right-it's Kami, right?

Kami: Yeah.

Alain: And that it's collate and integrate the various sources of data that is available. Okay, good. Other ideas that ought to be considered into the framework?

Male: [05:31]

On sort of the short-term, obviously, you know, once all this is done, is quickly educating our doctors and the insurance companies that, you know, these older, you know, blotchy endemic map areas aren't, you know, the only areas that you can get infected to avoid obviously the issues of people not being tested or being refused insurance.

Alain: So I'm just going to-my short form is, "Regarding inappropriate use of maps," you are far more eloquent than my short hand can be. I know that Mary Ann's back there taking furious notes. Yes, please.

Male: [06:14]

Small side issue. Ontario has signage. I would like to have at least suggestions for signage drafted-Parks Canada have those kind of people, graphic designers-bilingual acceptable signage to be put on picnic parks, paths, things like that, you know, low tech, but this is acceptable, suggested materials, anything like that would be a help.

Alain: So a core set of signage that could be used and leveraged all over the place. Great idea. Okay. Yes, go ahead.

Male: [06:50]

Yeah, so just following up on the, what can we do right away in terms of improving the kind of information we have underlying useful risk maps, how do we collect the type of field data that we're talking about in a way that is useful, but is not going to break the bank because you can't go everywhere? I mean, I think there's an important point of utilizing different sources of information. We heard about eTick, we heard about-you know, I think we can see what we can do with different sources of information. I'm going to put out a bid specifically for coordinated surveillance among provinces using an approach that allows us to have a systematic repeatable technique that's geographically representative, that can be done every year. Now the reason I'm saying that is that one of the big problems in the past is that provincial and federal funding for this has been patchy.

So one or two years in one province, there'd be no funding for surveillance. One or two years in another province, there would be. So you end up with a patchwork of data that can't easily be brought together in a meta analysis. What we need is systematically collected data across the country in a way that will allow us every year to produce updated risk maps from the same points that would be comparable, and there's different methods that could be taken to do that. But I think that in itself would be a very important step forward that could be done immediately because the people on the ground doing this type of surveillance exist in every province. They need to be coordinated and funded, and have a discussion about an overall strategy that we can do. I think it's just a matter of having that conversation and having the funding to back it up.

Alain: So what I'm noting here is that that's underlying-the output here is, "The coordinated approach really requires a federal-provincial strategy in terms of what we collect, how we collect it, so we've got a baseline of information that is trackable over time." Okay, go ahead.

Female: [09:07]

Two things. First of all, I'm just in development of educational materials and so on. I think we have to be very to the idea that we don't want to be putting people off the idea of going into the great outdoors, because we have too many people observing the great outdoors through Google Cardboard or something already. And then the other thing-and I'm not an expert in this, so maybe I'm kind of off the wall here. But just as a scientist, I want to know what the research questions here are. Like, once Lyme is in an area, if it's in the GTA or if it's in southern Ontario or in the Ottawa area, is it going to go away? Or-what is necessary in terms of kind of moving forward in a really rational way? Do we want to be enriching our information regarding the spectrum of diseases that are being-should that be more of a focus? Or should we be …

Alain: Sorry, are you looking at the continued research?

Female: Yeah, you know, this is-in terms of research, do we want just to go out and get masses and masses of ticks and test them for Borrelia or do we want to be, you know, enriching-I think we just have to be really careful about what our research questions are, make sure that we're answering good questions.

Alain: And you may have a number of people that want to respond to that, I think.

Stephanie: I'll jump out of my chair at this point and say-that's exactly what I'd do.

Alain: I haven't forgotten you, Stephanie. Yeah, go. Okay.

Stephanie: [10:53]

Should pass to me. Okay, I was going to say, I do the microbiome, so all of the bacteria associated with a tick, and that's useful for knowing what the co-infections are, but also how we can eventually control the tick. Because some of the things that I'm finding are pathogenic to the tick. And if we can figure out what's pathogenic to the tick, then we can start applying this in areas and we can reduce our risk, and we can find ways of, you know, they call it disbiosis. So we can figure out ways of manipulating the tick to reduce our risk. Yeah.

Nick: [11:26]

Just make a distinction here between research and surveillance. Surveillance is for a public health objective and so you're collecting-suggested a systematic information for some public health objectives. But research underpins that, so maybe within this kind of-there should be-well the surveillance objectives, we need to identify. But what also the research we need to do to underpin that. So …

Female: [12:04]

I think that one example might be something like West Nile virus. Like when West Nile virus, you know, erupted in New York City, all of a sudden we were saying, "Well where else could it be?" And there was all sorts of money poured into mosquitoes and mosquito trapping and mosquito mashing(?) up and testing for West Nile virus. But now we know that West Nile virus is around and it's going to go up and down with the immunity of the birds, et cetera, et cetera. And so there is some surveillance, but we're not pouring money into detecting whether or not it is in a place. And so that's what I mean by-it's probably a research question, but, you know, the question that we're trying to answer with surveillance, I think, is important. Are we going to survey the Ottawa Valley to see if Lyme is still here? Well, you know, that might not be the best use of funds, but are we going to survey it to see and to answer other questions and to see where we're moving?

Alain: So one of the things that we need to consider. So the point I'm tracking up here for the moment is, given that we have unlimited research dollars available in Canada, we need to be very judicious in the selection of our research questions, because there's complimentarity between surveillance, which has a public health outcome, and the research underlying that, and disease research. And they're complimentary between the two, so we have to be mindful of that in the selection of our research questions, okay? They are complimentary. I think that …

Female: … surveillance question. What is the surveillance question?

Nick: I think that we need to identify-there's a research agenda that has to be identified to underpin and support the development and future development of surveillance.

Alain: Better put than I just put it. I like, that. Okay, Stephanie, go ahead. You were on a perhaps different track.

Stephanie: [14:11]

So going back to the grad student comment about, get a grad student to number crunch, get everyone's data, I think we also need to look at what previous grad students have done. For example, MMI at McGill, Trop. Med. in 2007 was doing a global thing of not just Lyme but other diseases and they were mapping it. So that-by taking other people's work, if it's accessible, that might also be a starting point to look at what has increased or decreased. And then for a low-tech surveillance, I'm hoping that we're also looking at how to possibly reduce tick numbers. So I know in the U.K. they were looking at backyard gardens having guinea hens, because guinea hens eat ticks. Recently I read something about opossum eating ticks. So we now have opossum in southern Ontario, so is that on someone's radar to look now are opossums carriers or are opossums like the lizards in California that eat ticks and it sero converts to negative or something? So I'm hoping that's on someone's radar somewhere.

Alain: So the point here Stephanie is?

Stephanie: I know, it's-we need to look at the research that's already been done by the grad students and other areas of surveillance and build on that. We shouldn't start from ground zero. This isn't a new issue. And if they've already done a lot of the legwork, we have to see where some of that is and build on it to see, okay, has that area become more endemic? Or, you know, what pattern it's in.

Alain: Okay, makes sense. Go ahead.

Patrick: [16:01]

I was just going to follow up on a comment about the usefulness of surveillance going forward, and I think that there's a really important point to be made that you can't keep on throwing money at surveillance for no reason forever. It has to serve a function. And pretty soon we're going to be in a situation where the function of surveillance is no longer you'll be saying where there are or aren't ticks, because there are going to be ticks in a lot of places. So what other functions does it serve? Well one is-the next step potentially is saying, "What level of risk is there?" Because it's not whether there's one or two ticks. It's whether there's one of 100,000 ticks; that makes a big difference. The other thing is, what's the prevalence of infection in those areas? And so those are the things that you need to be able to track and monitor and keep track of. So there's that level of surveillance information, but then there's one other step.

We've heard about other types of tick-borne diseases. If you have a way of surveying ticks for other things, then you will be able to detect those when they emerge, if they emerge. If you stop looking, you're not going to see it happen and then you're going to have Lyme disease issues all over again with these pathogens that we know are present in the United States and in some places in Canada. But we're not looking for them anymore. So maintaining a baseline level of surveillance, we're not talking looking everywhere all the time, but sort of sentinel surveillance sites that will allow us to track over time what's happening within tick populations that we know are established in terms of the pathogens they carry and the sheer numbers that are in different areas, I think will remain useful in Canada for a very long time.

Alain: So Patrick-it's Patrick, right?

Patrick: Yeah.

Alain: So the point is here that you're suggesting that we establish a baseline?

Patrick: Okay, the point is we need a baseline level of surveillance that will be maintained into the future and is coming back to this coordinated systematic and present across Canada. And then that will actually allow us to collect other information than simply, where are there ticks? And so exactly how that backbone of surveillance for Canada will be set out and how many sites and how we do that type of surveillance is something that really needs to be discussed. But the objectives of surveillance going into the future-I think we'll acquire that type of information.

Alain: Okay.

Male: (Inaudible).

Alain: And sorry, it needs to be transparent?

Male: Yes.

Alain: Okay.

Male: (Inaudible).

Alain: Hang on, (inaudible).

Female: [18:41]

Sure, I can see that you're saying it has to be transparent. We have to have access to it. But I thought we also need to include the wildlife people because it sounds like you've basically got the system set and it may be just a question of coordinating with a system that already exists, especially for ticks. Yeah.

Male: [19:00]

So the comment I want to come to is-I'll go on to Dr. Ogden's point and (inaudible) as well, was, why do surveillance? We're talking a lot about acquiring new information and understanding a disease, which gets us into the research side. For me, surveillance is about action. It either tells you we have to do something or that here's something that worked or didn't work. And as I'm listening, we still haven't articulated the objective of what a surveillance program could be. We're talking a lot about requiring new information about a disease. What I'm hearing throughout the conference, a big target for a lot of people, is they want to affect behaviour change, and there's several behaviours. They want to affect the behaviour of people who are going out who may take or not take appropriate risk protection. We want to change the behaviour of workers' compensation for how they provide. We want to change the behaviour of diagnosticians. The challenge is we have to design a system that gives the information that they need that will affect those changes. So we're coming here as a group of (inaudible) people who have interest in tick biology or in this or that. But without understanding the information we need to affect the changes we want, we will design a surveillance system that will create lots of neat papers, lots of neat databases, but won't affect change. The very first stage we have to (inaudible) is, who are the change targets and what is the information they require for us to move forward?

Alain: Great point. I hear some quiet clapping in the room. Okay, Kami.

Kami: [20:36]

One thing that's been touched on but I guess hasn't been brought up as what needs to happen to get to successful surveillance is community-driven science. And I know several scientist researchers who are very involved in bird surveillance. That's how we know what birds are in New Brunswick and what the populations are doing and what numbers are declining. It's how we know about butterflies in certain areas. There's national community-driven science projects that provide excessive amounts of data and there's no reason we can't have a community-driven science group for surveillance that works with the NML and public health to provide information in a systematic way.

Alain: Okay, good point. Community-driven, community involvement. Ashley. Nobody else is waving, so it's you.

Ashley: [21:32]

Okay, great. My point is more on human surveillance, which we haven't really spoken about all that much. We talked earlier about needing to find what physicians are going to report, because we're saying they're not reporting but they don't know what to report. Are they only supposed to report patients that present with positive serology here in Canada? Do we only want them to report people who have the characteristic EM rash, which isn't present on the majority of patients? So they need to report people who are confirmed serologically, but also possible Lyme disease patients, people that have co-infections, MS, fibromyalgia, chronic fatigue, other things that could be Lyme that we haven't really identified as Lyme because the serology just isn't sufficient at identifying Lyme right now. And, like, yesterday as Dr. Lloyd was mentioning in her talk, the projected numbers in New Brunswick for how many patients should have Lyme based on the tick population just don't add up. It should be 6,000 and there's only five reported cases. So where-the disconnect is between what's being reported, and that's because physicians don't know what to report.

Alain: Right. Okay. Patrick, please.

Patrick: [22:54]

I just had a quick comment. I think these discussions about the citizen science potential are really important because we're dealing with something that-the more you can involve people who have a vested interest in this issue, the better you have both the ability to collect more information, but also have, you know, very on-sorry-public health messaging that's passing sort of through people who are getting involved and interested. So I think the idea of looking to see who has the most vested interest in some of these issues and seeing who would be willing to participate is important. And just to add one idea that we've been looking at in Quebec and we're doing a feasibility study of this this summer is, what about parks? I mean, we're talking about workplace hazards, who are going to be the people who are most exposed to ticks in the environment? Maybe, you know, park workers and the parks have a vested interest in understanding what's going on within their areas. And they happen to be public health hot spots, because that's where people go to the woods predominantly, I mean, in addition to other places.

So, you know, could we involve also other stakeholders like park personnel in carrying out surveillance activities which would allow us basically to decentralize the collection of information, reduce costs, increase engagement, and I think it's another type of involvement of not necessarily just any citizens but ones who are particular risk groups and also have an interest in the information being collected. And maybe there's other groups who can be targeted specifically. Obviously the Lyme associations are full of very motivated people who might be interested in volunteering time to do that. So that's-I think looking to see who cares and who's willing to participate is probably an important step with this.

Alain: Okay, good point. Thank you. (Inaudible).

Female: [25:03]

Sure, I'm just going to point out, when it comes to the parks workers, there's that whole human dimension. We have lots and lots of parks workers who have Lyme disease and they send me lots and lots of ticks, but they don't do it officially because one thing you're up against is this entire feeling you don't want to prevent people from going into the parks. So I agree that I think they'd be really happy to help, but you have to recognize that there's got to be really careful messaging right around that.

Alain: Well it's not just park workers as well, it's those that work in those industries that bring you into contact with these. Forestry workers, you know, you name them. I mean, there's many, many … I'm going to go to WebEx in a minute or two, but I've got a couple of other comments that are coming from the floor. So go ahead.

Male: [25:48]

So again, I want to bring this up one level, and this reflects 30 years of trying to do this sort of stuff and getting cranky. What we're-and this isn't just a Lyme issue. Canada sucks at sharing information across the provinces because of the way our legislation delivers health care. We suck at sharing information (inaudible) environment, animals and human health. If you want to achieve what you're suggesting here, and remember we're talking about the federal framework-we're spending a lot of time talking about data acquisition-it will not work until we have a new governance model for surveillance. And so we have an opportunity in this framework to think about how do we more effectively use and integrate this? And it does not happen automatically. I have done this for so many issues in so many places-I've had this discussion over so many diseases over the past several years with the same problems. And we have great-we get a call for Encirca, we get a five-year money and people collect some data, and we don't maintain it. So there has-a federal framework can really make a difference in this country (inaudible) a new governance model of how to really(?) list public health risk from the environment, through to our health care, through to the patient. And that would be a huge contribution if we can achieve that.

Alain: For the record, what I have noted on the flip chart is that we have to stop sucking at sharing information. And your point is, we need a governance model that allows that fluidity of information between the various levels of government. It's not just federal-provincial; it's also municipal. It's also areas where you've got regional governments that's also a problem. Okay, Stephanie.

Stephanie: [27:22]

Just again to look at what other countries have done. How does Australia deal with their travel and tourism? They've got infectious spiders, they've got infectious snakes. It doesn't make people too afraid to go. They've got good signage, good posters that people can easily read and identify and know what to do. So maybe we can start looking at that.

Alain: We have to stop branding Canada as, "Winter, the thing that can kill you."

Stephanie: Right.

Alain: Go ahead.

Male: [27:51]

I'm going to try and segue from the point made very articulately and forcefully about sharing data. One of the reasons why data isn't shared very clearly between jurisdictions and so on is there's often not agreement on what the units are that are being surveilled in some way. And I think it's very important to come back to a point that was made earlier, but has a little bit gotten lost, and that a lot of the problem with surveillance is disagreement about what is it that we're monitoring. Is it just Borrelia burgdorferi, sensu stricto, sensu lato, co-infections and so on? And to do that there has to be a dialogue around an enlarged sense of the kinds of things that are being surveilled. Even if the cost is slightly higher, it's going to pay off in the long run. In terms of compatibility between different units that may wish to actually monitor slightly different things.

Alain: Meg(?).

Meg: [28:56]

Thanks. I agree completely. Actually in '90s and early 2000s, we had better data, various public health things in Canada, be they chronic disease and cancer incidents and so on. We had much finer grain data, much more comprehensive across the country from that era. Apparently Stats Canada seems to have lost a lot of that data. I have no idea what's going on there. But, you know, it has happened before; it can happen again. I wonder about the role of the Canadian Council of Ministers for the Environment on this and I'd also note that it's not just the tick data, the strains and the ticks. It's also obviously the human and the veterinary data. There's a whole bunch of different types that would be awesome if we could coordinate.

Alain: So for those that may not be familiar with the Canadian Council of Ministers of the Environment is the federal, provincial, un rassemblement of ministers of the environment. They do that formally a couple times a year. It varies over time, it varies over the evolution of political agendas. Nick, you wanted to add on that.

Nick: [30:15]

Yeah, I just want to make a point about the-I think the-if there's lack of a systematic nature of collecting and bringing together and reporting out on the environmental risk. That's just down to the fact that we haven't-I don't think we've ever had the resources enabled to do that. There's no real barrier to doing that. And we have made some effort to do that in a number of fields, to bring information from loads of places you've mentioned and kind of map it all out at the whole Canadian sort of level recognizing that that's not always systematic. So there's no actual problem with that. However the problem with bringing a national information act human case starter is down to privacy law both-and the differences between federal and provincial privacy law. And so that is-I think it's recognized as a problem. And there is a process to deal with that called MLISA, which is Multilateral Information Sharing Agreement. So we can't do anything better at the moment. We know this problem, but there is a process underway to try and make, you know, make it better.

Alain: Alright. I'm going to pause there for comments in the room right now. We're still on the question of what needs to happen to achieve the desired end state with respect to surveillance. I'm going to go to WebEx at this point and ask the operator if there is anybody that (inaudible) to comment.

Female: (Inaudible). Over here, I've got the microphone. Go. Yeah, he's going to turn you on.

Male: I know-oh, there we go. Something-I completely forgot (inaudible) …

Alain: We've got the feed from the other room right now. Sorry, (inaudible). Okay, so going to WebEx. We need a microphone.

Male: (Inaudible).

Alain: Oh there's a written comment. Okay, thank you. I wasn't aware of that. So we'll take a written comment from WebEx.

Female: It is from Louise Lamberg(?), and she is stating, "A suggestion is to include co-infections as mandatory report disease."

Alain: Okay, thank you.

Female: Merci.

Roseanne: Thank you. If you have a question or a comment, please press star one on your telephone keypad. There are no questions or comments at this time.

Alain: Alright, thank you. Coming back into the room here, is there any other suggestion that you have with respect to any ideas to be included into the framework that is under consideration? Ryez.

Ryez: [33:08]

This is just a quick comment on signage. I know there is a few parks around Winnipeg and Manitoba that have some signage and they tend to be these really small letter-size posters kind of stapled to a telephone pole or something like that. And they're really not very visible and obvious. And, you know, I've done surveying in some of these parks and, you know, every once in a while I get someone coming up to me asking me what I'm doing. And obviously, I tell them, you know, "I'm surveying for ticks and Lyme disease." And I've never had a single person aware. So we have to make sure these signs are very obvious and clear so that they're actually effective.

Alain: [33:43]

Absolutely. (Inaudible) pick up on something that Stephanie has been saying about best practices. Curtis? No, Curtis, I just want to point out something that the Kingston Frontenac health unit does very well on Wolf Island. I'm an avid cyclist, cycled Wolf Island many times. They've got metal signs saying, "Presence of Lyme disease …" I forget exactly what it is. But you get off the ferry and your first reaction is, "Whoa! Alright, so I've got to be aware of this." So that is a really good example and a best practice of posting it up and making-it's all over the island. You can't miss it. So it's very, very well done in that respect. And it really, sensibiliser, builds awareness on the part of those that, like me, are just going out for a recreational bike ride. So …

Male: (Inaudible).

Alain: I beg your pardon?

Male: What did you do differently?

Alain: Well I didn't get off my bike, go out into the middle of the field and lay out in the corn to enjoy the sunshine. Instead my wife and I sat on the side of the road and stayed there mindful of the presence of ticks in the field. I mean that is the ultimate behaviour change that you want to see. So sorry, a bit of a footnote on that. Let me come here, and I'll come back to you in a second.

Meg: [34:57]

Just on the patient monitoring for the physician reporting, I think we should also include naturopathic doctors in there, because many are treating patients right now.

Alain: Okay, thank you.

Meg: Just so they're not forgotten.

Alain: Right, got it. Who are you going to next?

Meg: [35:21]

And just to add to the notion that naturopathic doctors should be reporting along with physicians, there is a lot of persecution of various types of health care providers who are dealing with these chronic ill-defined, really nasty diseases that have to be treated in ways that other people don't think are responsible or whatever. So within this, there really has to be the-you know, you've heard it before.

Alain: Awareness, yeah.

Meg: Well, not just awareness, but there has to be some kind of protection for the healthcare providers that-and be it, you know, maybe you need to have some kind of anonymous ways or some kind of-some collector of information that is an intermediary or something to protect these doctors, because we have doctors who are saying, "I could treat, but I just send my patients to the U.S. because it's just too risky. I'd lose my license. I have really serious impositions in terms of reporting put on me, real limitations." Yeah, you've heard it all.

Alain: Right. There's the threat of the loss of licensure they're in.

Meg: Yeah. And all sorts of other-there's a whole stack of things that are happening. But, I don't know, maybe there should be kind of intermediary for reporting that protects them. I don't know how you collect this information in reliable fashion and still provide the doctors and health care providers with some kind of anonymity so that they're-it's a very difficult question.

Alain: Right.

Meg: But I just-to emphasize that.

Alain: Okay, thank you, Meg. I know that Stephanie back there has got a poster. I know what that poster is.

Stephanie: (Inaudible), for anyone who hasn't seen it.

Alain: It's a poster on Lyme disease awareness.

Stephanie: From 1991. And there's more on this than what you will see from any health department.

Alain: So maybe just could you repeat that with the microphone nearby so that we can pick that up?

Stephanie: [37:32]

This poster is from 1991, and it was made in conjunction with those that are IDSA as well as Joseph Burrascano of ILADS. So that's interesting. And there's more information on this about Lyme disease, but also the various forms of EM rashes, including lymphocytoma. All the different systems of the body that are affected, including ocular for example. And there's more on here than any health department puts out anywhere. And I've actually mailed this all over the world to different Lyme groups. And doctors have asked me for this. So anyone else who can track them down.

Alain: And they are still available and in print?

Stephanie: It was only a few years ago that I ordered 250.

Alain: Oh wow.

Stephanie: Now I'm down to my last 20.

Alain: Yeah, so if you're interested in picking up some posters, please see Stephanie. That was an unpaid announcement brought to you by myself.

Female: [38:27]

Is it possible to get the-is there a pdf online of that so that other people could print it.

Stephanie: I don't know, but I will let you photograph the bottom of it, so you can (inaudible).

Alain: So the answer for the record is that Stephanie does not know whether there is a pdf of it, but there is some information on the bottom of the poster that would perhaps give a reference point as to where it can be obtained.

Female: Is that something that could be made available somehow-obviously you have a pdf of it. Could it be made available along with the presentations or whatever?

Stephanie: I'm trying to hand it in. I've already handed in one copy. Here's another one.

Alain: Okay, so it's been handed in to conference organizers. I can't speak for the conference organizers, but perhaps it can be part of the conference record. Alright, I'm coming back to the question. What needs to happen to get there? Are there any additional ideas that you would like to have heard to be included for consideration in the framework?

Ryez: [39:30]

Again, back to the signage and looking at the federal aspect, obviously we can't go putting signs absolutely everywhere. So I think there needs to be a standardized criteria on, you know, what parks, what areas get signage.

Alain: Alright.

Female: Anything else?

Alain: Sorry?

Nick: Just resources and planning.

Alain: Say more on that, Nick. Resources in terms of?

Nick: This is in order to get to where we want to go.

Alain: Right, so we need more...

Nick: It's got to be resourced and it's got to be planned.

Alain: Okay, got it. Yeah.

Nick: (Inaudible).

Alain: Okay. So let's go back here.

Female: [40:13]

Hi. Thank you. I am a veterinarian collecting ticks from dogs in an emerging area of Lyme disease in Ontario. And I think it's really important that we include other tick-borne diseases. Other ticks are moving-sorry, I'm really nervous. There are other ticks moving around the world, all over the world. And I think it's important to acknowledge the fact that we have a huge opportunity right now to make a bigger surveillance of many other diseases that we could be encountering and perhaps this is the jumping off point. Not disrespecting Lyme in any way, because I think that's what's brought us all together into this room, but there are wildlife issues and there are other tick-borne diseases and there are mosquito-borne diseases. Public Health works on many levels and perhaps we have an opportunity now to coordinate that on a national level across the country. And I know you guys work really hard to try to do that. But maybe this is a jumping off point where we could include Lyme and include other things that are coming up.

Alain: Alright, thank you. Anything else? We need a microphone over there.

Female: [41:27]

I just wanted to build on that and maybe just explore it a little bit. I mean, if we were to combine Lyme data with, say, SARS or West Nile information, does that actually help in the surveillance in terms of resources and allocation and getting the word out there about collecting information and getting more interest?

Nick: Maybe I could answer that just a little bit in terms of what we've kind of been thinking internally planning, which is that these are environmental health hazards, so if you go to point X, you're not just going to get Lyme or anaplasma or whatever. You can get snowshoe hare virus, you can get a whole other-so this idea of aiding surveillance for these hazards, in other words, surveillance involves going out and doing something. So if you're going to collect ticks, you might as well collect mosquitoes as well because the expensive thing is sending somebody out there. So, yeah, doing the sort of (inaudible) you'll end up thinking around this surveillance and around the design of the surveillance, in terms of human case surveillance as well. When people who are acquiring infectious diseases that are not being diagnosed in the current system, people think they may have Lyme disease. But maybe they've got snowshoe hare virus, and which is resulting with persistent long-term illness, which is-I'm just suggesting that these things, we're not tracking. And we're not understanding what people have-whether these other risks are involved. So in short, I think that this is the way we should be thinking.

Alain: There's an opportunity there that can be seized.

Nick: Yeah, (inaudible).

Alain: Over here.

Male: [43:31]

It's interesting that you are saying it could be more efficient to look for other things while you're looking for Lyme or whatever. Quite a number of years ago in Alberta I think there was going to be some provincial survey of various animals-I can't remember what-having nothing to do with Lyme or anything. And I remember asking the organizers, "Could you possibly have the people who are doing the collections," I think they were basically live-trapping rodents and things like this, "Could you have them in every area they're going just sweep for 15 minutes somewhere so that we could find out more about the distribution of ticks and so forth?"

"No, sorry. We don't have that in our budget." So you're right, there is this-how much would that have added to the budget, you know? They're there anyway, so another 15 minutes of work in the field. Sometimes people just don't realize that you can broaden whatever horizons you're with.

Alain: Okay, good. Thank you. Pass the microphone over in that direction, there you go. (Inaudible).

Female: [44:40]

Sure, and my question is for Nick, because one of the things that I'm concerned about when we talk about Lyme disease and we know it includes all the co-infections, I can get kind of square one with the doctors and say, "We need to test for Lyme disease." And then I say, "Well we also need to test for …"

And they say, "Whoa, don't go there." So one of my questions for surveillances, I understand we have limitations. Like, I can do all of(?) bacteria. I don't do 18S, I don't do fungi, things like that. So I recognize they're all really important but we don't want to dilute the message that we have a known pathogen. We know we have a problem, so let's not sort of allow ourselves to run off, although-I mean I recognize they're all important. But we need to have some focus or the moment we get to the next level up, they're just going to say, "That's too big a project," you know.

Nick: I get your point on that, that kind of-for this there has to be some kind of a poster child, because otherwise the people don't get it. However, from a public health standpoint, I think it's not something-these are not notional things. We know people are getting encephalitis from this California serogroup viruses. We know we're not monitoring them. We know that the people have long-term scoli(?) as a consequence of these infections. We know we have emerging-we know that in parts of the country, Eastern equine encephalitis has emerged here. We're not talking about it, but we know that it's there. So these are not notional; these are real. And I understand your point, but we've still got to do something about these other things too.

Female: Right, and I agree the tick specimens can be used for viruses, they can be used for all sorts of things. But I do really kind of worry that we're going to get deluded out of existence if we're not careful.

Alain: Okay, very good point. Thank you. Yeah.

Vett: [46:40]

This is perhaps a larger question, but it's something we can and I think should do, which is have some sort of mechanism that we-not only to capture these wonderful ideas, but come back to them and check in a year's time how far we've gotten with them.

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