2016 Lyme disease conference breakout session 1: surveillance part 3

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 2: Monday May 16, 2016, Rideau Falls room

Audio Recording


Alain: [0:00]

Several that have been scribbled, give me one, and listen for others who may have the same key message, and if you don't strike it off your list, I'll come back for a second round. Okay? I'd like to do this fairly quickly. Who would like to start us off? I was going to go there, but she was faster. We'll get to you. Okay, so I'm going to had this to you because I want to take notes.

Female: [0:24]

One of the things that we were talking about a little bit is that the limitations of the data is getting lost in translation when it's going to laypeople or doctors, or other people on the frontline.

Alain: So the translation, getting lost, as it goes through…

Female: Or the limitations of the data that there's certain things that it's not useful for or there's some narrowness to it, in terms of strains being looked at.

Alain: Perfect. Alright. Great message. Who wants to go next? Raise your hand. We've got a hand right up there. Perfect.

Female: [1:02]

Sorry, I have a few. But I'll just…

Alain: Give me two.

Female: Okay. So first, I think, to emphasize what she was saying, we aren't recognizing all of the different species of Borrelia that are present here. As a result, our testing, which we know is inaccurate for Borrelia burgdorferi, is not at all picking up any of the other species that are present. So we need to first recognize that they are here to jump from that, related to that, the data collection. If we're collecting accurate data, then we certainly need not cut off the collection from dogs and other species. If we're going to get an accurate dataset, and it may be true that there aren't enough resources, then we need to devote resources to those things. Because if you're cutting out all of those things, you're not getting an accurate picture of what is actually represented.

Alain: So I'm hearing three, good. Well done. You snuck one in there.

Female: [2:29]

The other thing would be just to echo what Jess had said, the role that community involvement can play in the more accurate representation of the data. If people are out dragging and finding the ticks, it just gives an even bigger and better and clearer picture for researchers.

Alain: And it's also, as we were told, it's also a very good way to leverage community involvement and raise awareness. Right.

Male: [2:55]

In regards to the tick risk maps and Lyme endemic areas, obviously everybody's in agreement that they need to be updated, but they need to be updated with an integrative set of data, whether that's passive surveillance, active surveillance, as well as veterinary data.

Alain: Okay. Very good. So just, who wants to take it next?

Female: [3:20]

Hi everybody. Actually, I'm just going to touch a little more, because we noted the same things that were already noted. One of the things that I heard indirectly was that we do need some more money and resources in terms of the testing, so that it's more inclusive of more than humans, but also the animals. It sounds like not all specimens are being tested. And I think in order to be having accurate surveillance we need to do that. Also, we heard from Ontario, but we haven't heard from any of the other provinces, in terms of surveillance that they do for their own vectors. I think that needs to be developed across the country.

Alain: Perfect. Thank you very much. It's okay to argue over the microphone. But please, no violence.

Female: One of the big issues raised is-hang on a second, big issue is the area to deny diagnosis. If in a specific province, an MD submits too many case studies, they are then hassled by their College of Physicians and Surgeons. Also, one of my pet peeves is with the variety of demographics in Canada, why is-because we've got so many levels of health authorities, why can't we have at least some of the groups translate the information into different languages? So that that way, cities, provinces, whichever, can pick from the same general library source of accredited and consistent information across the board from coast to coast to coast.

Alain: The information has got to reflect the diversity in this country. Great point. Okay. Anything else? Okay. Let's keep migrating that microphone, maybe it needs to go on the over side. Perfect.

Female: [5:16]


Alain: I see hands being raised in the back. It'll get to you. Carry on, please.

Female: I actually have a couple of things. One was a take off, off of what you had said about when you had spoken with your local Medical Officer of Health and said they actually weren't funded for conducting surveillance and vector-borne, Lyme disease specific surveillance, that's true. Sorry. Sorry. I guess I would put the plug in there that if surveillance at the local health unit level is to be continued and carried on that we should look at funding sources around that.

And then the other piece of it is the recognition around human disease surveillance and that is that the gap when a clinical case is diagnosed by a physician, it's reported to local public health and we would report that to the province, and that's fine. But I guess, there is a huge variation across the province in terms of physician knowledge. So this one really actually has both feet in both surveillance as well as education streams. So just really bringing the healthcare providers across the province up to speed with some of the more current information.

Alain: Great points. Alright. Thank you. If the microphone can-carry on.

Female: [6:33]

Okay. Further to the point about the surveillance, we know that most people are not going to go to the internet and investigate websites as their walking down a trail to find out what they should be looking for. The fact that perhaps signage should be a lot more visible or prevalent, and even more than bilingual, multilingual, depending on the area you're in. Just so that people can be made aware.

But the other thing though, with regards to proof of surveillance, I think it would be of great benefit if the health units for each specific county posted whether it be in the newspaper or some other way, for the public of that area to become aware, to know exactly what their risk factors are, so that they can then take the appropriate precautions, it would save a lot of people a lot of trouble and a lot of suffering.

Alain: Great points. Thank you. We can maybe make the microphone make its way in the back, that'd be great.

Male: [7:41]

Hi. Something I forgot to mention. I walked into the Department of Environment, it's up the street from me, last week, and there's a tick poster in there. And a big black 'X' with a marker pen through Nova Scotia surveillance, crossed off. Not done. We're not taking-the sign that was there would mean to me, we're not accepting any ticks, don't bother us, we get too many. You people are taking too much time, we've got nowhere to send them to, nothing ever happens to them. So that has to be sorted out at the other end too.

And the other thing we brought up in here was this reliance on endemic zones to exclude people in diagnosis, my preferred term was 'hotzone'. And I think that's probably enough points for me. Who else would like it?

Alain: Needs to make its way to the front. Oh, looks like it needs to make its way to the back. Jim?

Jim: [8:38]

Yes. There's certain different standards I think between reporting tick infection rates, and I'm going to use British Columbia as an example. In poster presentations given by individuals from the BC Centre for Disease Control, there indicates that there is variation with, region by region, of tick infection rates. Yet, when it's reported to the public, it's repeatedly said to be 0.56% of the Ixodes tick population, which is very, very low.

Now, our ticks come from California and regions which report regularly that the tick infection rates varies wildly from county to county. You can go from a very low tick infection rate to a very high tick infection rate. So how is it the public is consistently given one flat rate, and we're never given the data, region by region? What is the tick infection rate in Cultus Lake? What is the tick infection rate in Langley Park? What is the tick infection rate at Shawnigan Lake, where the kids go to their camp every year?

That's the kind of data that the public needs. Not this one flat rate tick infection rate. And I think that has got to change or the public and the doctors are being misled.

Alain: Great stuff. So the granularity and precision of data is absolutely key for informed public and informed activity outdoors. Okay. Go ahead please.

Reuben: Very quick comment, related to that, Jim, is if you look at the maps given by the CDC, they do show different, based on their sampling, different rates. But I suspect if they're giving some global number, they're giving some average, I don't know. But whether or not one has to actually look at the maps they provide to show how actually variable the rates are, as it is in California and other places. Or am I misunderstanding something?

Jim: Every time the public asks that question and a reporter asks that question, it is 0.56%, province-wide. There is no regional variation, and the doctors, the information that's going to the doctors in Kelowna, in Cranbrook, in all those areas, is basically the same representative value. And so that has got to change.

Alain: Okay. Good. Thank you. Can we make the microphone migrate towards the front please?

Female: [11:35]

Yeah, I'm sorry it's me again...

Alain: How did you…

Female: I forgot to say something.

Alain: How did you intercept that? Go ahead.

Female: Good. One of the things we identified in our little group is actually hopefully something that will change. And that's who actually reports the surveillance. I know myself, and I know a lot of people who have spoken last night, is that a lot of the medical doctors haven't really been supporting us. They haven't recognized us, they haven't diagnosed us. Often, we have to go to naturopathic doctors. They do recognize it. We have to go to the States' doctors. I would like to actually see those people reporting. I think our numbers would be more accurate.

Alain: Okay. Good point. Thank you. Have the microphone come to Jill, please. Jill?

Jill: [12:25]

And that was going to be exactly my point. We have a full circle of-Health Canada's data is based on health reporting data, there's no reporting getting done in all the provinces. Therefore, Health Canada data is not accurate. So it's a vicious circle of inaccurate data.

Alain: Okay.

Jill: That has to change.

Alain: Alright. I'm going to take a couple more points, because we're running fast out of steam. Yep?

Vett: [12:57]

I'm just going to quickly throw this in is one thing you can do with the CDC website, it is very easy to access the data for breakdown by year, breakdown by state. And it's hard to get that data for Canada. It would be lovely to see Public Health Agency of Canada just mimic that information so everyone can actually find out what the risk is in their area and by region of province.

Alain: Great point. Okay. We're going to bring the microphone over to the back there. Thank you very much.

Male: [13:27]

So we had a discussion about risk maps. So one thing that came out was that it's impossible to have perfect information everywhere, and that's just something that we're going to have to deal with. But obviously, more resources devoted to surveillance would help improve that. The corollary with that is there's also no ideal risk map, but the type of-there's a problem with the interpretation of areas that have no data as indicating no risk and I think that's something that-in the way that these maps are being used and misused needs to be taken into account.

And so, ideally, we would have risk maps that were based on complete geographically representative data. And so there are different ways of achieving that but some form of-a strategy for standardizing the way that data is being collected among provinces and having sort of an overall strategy for generating maps that will be useful. These are initiatives that are already underway with public health agency and different provincial agencies that I think really needs to be promoted and supported, both financially and with these kinds of initiatives. Because that's going to be what's going to provide the type of information that people are looking for on these maps. Other points you guys…

Alain: Alright. Thank you very much. Good. Thank you very much.

Dr. Ogden: [14:55]

Can I just-I don't know whether I…

Alain: Nick?

Dr. Ogden: Things that I heard but I didn't hear repeated just now, and correct me if I'm wrong. One was systematic, that we should be doing something a bit systematic. Is that-did I hear that? The other was one health, continuing to do stuff with vets. Am I right? Yeah? And the third was citizen surveillance, citizen-based surveillance…

Alain: Yep, we talked about that. Absolutely. Okay. Thank you very much. Ryus, you want one more point? Can we just run the microphone quickly? And we're going to adjourn right after that. No pressure, Ryus, no pressure.

Ryus: [15:42]

Yep. On the same point as identifying areas that have higher infection rates and that, it would also be useful information to-this will be tougher because in many of the provinces, they don't actually analyze them. But for the different species of the bacteria. Like I know, miyamotoi has been confirmed in Manitoba, but that's not mentioned anywhere. So if you have a park, that say, somewhere in Manitoba, or whatever province that has confirmed infection rates of a European strain or, whatever other strain it might be, that's important information to know.

Because if you're in a risk area that has an infection that you can't actually get a test for here in Canada, you need to know that.

Alain: Okay. Good. Thank you. Ladies and gentleman, thank you for your time today. We are-today we've spilled into part of the discussion for tomorrow, but that's okay. Because tomorrow, what we want to explore is: what does an ideal surveillance system look like for us in Canada? So think about that tonight. Let your dreams evolve, and over the course of the conversation tomorrow is going to be all around how do we do that.

Very important announcement: I found a wallet with $200 in it. Ah, now I got your attention. There's a shuttle bus that will leave, it's probably left already, but if you're in a mood to sprint to see if it's left, it was to leave at about quarter to five. There is another shuttle bus leaving at quarter past five. And we resume tomorrow in the room next door, Algonquin, at 9:00am. Good evening, folks, and thank you for your sustained effort.

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