2016 Lyme disease conference welcome remarks, recap of day 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, Algonquin room

Audio Recording


Dan: [00:00]

Welcome, thanks for coming back. This is great. I was worried. The real work is today. Yesterday, there was good talk, good exchange, there was friction, little bit of friction. Friction is good, because this is really about seeing who's in the game, who cares, who needs to care, who do we need to work with. What kinds of things need to be done together to really solve certain problems that prevent us from curing this disease?

We looked at the science, we looked at your experience, we looked at various ways to approach things in awareness and education, in surveillance, in guidelines, and so on, and best practices. And of course, it's not all pretty. It's messy. It's extremely messy, because nobody has all the answers. This really is an opportunity today [inaudible] to see what the next steps are, which actions will improve the way of solving the problems, difficulties and challenges that must be overcome to try to address this disease.

So, you know, in every good meeting, every good conference, there's always three parts, and there's always three questions that we want answered: It's the what, the so what, and the now what. Today is about 'now what?' We started that yesterday. The facilitators were telling me they had challenges with you people. They had challenges. This is a tough crowd, because you were chomping at the bit to come up with some ideas that we're going to consider today. You know, when they were asking you for key messages coming out of the discussions yesterday-and it's all good, it's all good.

So, today is in three parts: one, we're going to hear from your facilitators on the key messages that really came out yesterday. And of course, as I did yesterday, they won't be comprehensive, they won't list out all ideas, but they'll try to share with those of you who were not in the various sessions the key ideas that emerged. And that'll be the first part.

The second part is-we're going to try to get you out of here as soon as we can, not because we want to get rid of you, but we want you to go into your respective rooms to look at-so, what ideas would you want to contribute, that you feel should be considered in the development of the federal framework? And we want to dedicate the entire morning for you to work on this. And then at lunch, we'll have the facilitators, the note takers, get together and try to get all those ideas. So, at one o'clock we can bring these ideas into the room. And while you won't have a chance to comment on what they're going to say this morning, because it was just key messages from yesterday, this afternoon, when they come back with ideas that you've proposed, we're going to put them on the table, and if you were not in Surveillance, (inaudible) of the work in Surveillance, and all the ideas are going to come out, we're going to give you the opportunity to comment on them, and to add, especially if you weren't in the group. If you were in the group, your ideas would obviously be considered. So, we want to give you the opportunity today, this afternoon, especially after lunch, to really comment and add your own, so that by the end of the day there's two things that are clear: one, the ideas that you heard that you think should be part of a federal framework, or should be considered to be part of a federal framework, and two, where does this process go from here? How is it going to go? And we're going to hear from the tri-chairs at the end of the day; Dan, Jim, and Greg are going to share with you, as tri-chairs, where this process goes from here.

But, you know, in the discussions that we've had so far, on Sunday night, yesterday-yeah, when you're in a big tent and it starts to rain outside, you rub elbows and sometimes, you know, it creates a little friction, but it's about being together, it's about finding a way to work together. You know, in the international work that I've been privileged to do, trying to help various populations fight tough, tough diseases, there's a very interesting African proverb that I would invite us to be mindful of today, and it goes like this: Alone, we can go faster, but together we can go further. Let's be mindful of-there's a whole bunch of us involved in Lyme disease who really can play a critical role. How are we going to leverage the best of all of us to be able to create a framework that's going to address Lyme disease the way Canadians deserve to have Lyme disease addressed, in one way, shape, or form? Today, essentially, is our day to do this, to generate the best possible ideas that can create the best possible framework. All right? That's our task today.

So, without further ado, let me invite Alain Rabeau to share the results of Surveillance. And before we actually go, I'll share a few other administrative messages with you. Alain?

Alain: [05:52]

Thank you, Daniel. I would like to thank those who obviously who go and left [inaudible] the summation of [inaudible], but particularly our speakers from yesterday afternoon: Nick Ogden from the Agency, Natasha Rudenko, who is from the Czech Republic, Vett Lloyd from Mount Allison University, and Curtis Russell, who came from Public Health Ontario. The presentations were still powerful enough that I think we will continue. We discussed throughout the day this afternoon. I will even invite our participants who are part [inaudible] to continue to consider what was disclosed by our speakers yesterday.

Surveillance was the topic, and you can imagine, with all four of our presenters, we saw a lot of maps, a lot of risk maps, and a number of key messages emerged from our conversation after the questioning, to-and-from discussion amongst ourselves. And one of the key messages that came out was that risk maps have to be continuously updated. Understanding that there's a lack between data collection and producing of the map, the more that we can shorten that span, the better and more useful those risk maps are. We also stumbled across a really important and interesting fact: it is that we've now recognized, from our conversation, that some of these risk maps are being used inappropriately to determine testing, diagnosis, and we had a very compelling point made, that these risk maps are also being used to deny insurance coverage in some instances, which was a bit of a-for me, anyways, and I think for a number of people around the room, a bit of an a-ha moment. We also recognize one of the inherent limitations to surveillance data, and what one of the participants coined as the 'lost in translation factor', which is we lose some of the importance and meaning and utility of the surveillance data as it goes from scientist to medical staff to general public to informed public, such as you, and so on. So, there is that factor that we have to bear in mind that also has some implication, of course, for the Awareness and Education group.

One of the presentations from Dr. Lloyd was quite telling and, I think, also drove home the point where the leveraging-I've kind of tagged this and encompassed this under 'Leveraging Community Involvement in Surveillance.' That's the headline, if you wish. But what was really interesting in the conversation, because many of you already do surveillance on your own, there's huge advantages to broadening the data that's gathered, and Dr. Lloyd also pointed out the huge corollary effect that this has in terms of raising awareness in local communities. As you're going out, collecting these data, there's huge awareness that can be built inherently in that.

We also had some conversations around community involvement, around the need for precise methodologies and so on, and also raising concerns or the preoccupations around safety of those that are also doing that kind of surveillance. So, those are part of the conversation.

Around the dissemination, and I'm going to coin this, and this is my own term and it may be somewhat lacking, it's the granularity of the information, and this spun quite a bit of conversation. Jim, you were certainly part of that conversation at one point. There's a need to have information that is precise enough, that allows us to make informed choices, allow communities to make informed choices. And the example we gave is to put a prevalence or infection rate of ticks at a provincial level is quasi-meaningless. We need more granular data to make those informed choices, which was also one of the conversations, and Dr. Lloyd, again, was the one to bring this up, is that the Centre for Disease Control has a model that is used, in terms of breaking down that information to a regional level, that perhaps we could use and inspire ourselves with or by, to use that kind of information, that kind of data. So, that was another key point that was raised.

As with, I suspect, the other two break-outs, the surveillance break-out felt absolutely necessary-as we say in French, to go play in the neighbour's backyard. So, we talked about education and awareness as well in our conversations. There's two things that came up, and it was very much driven from the conversations that we got following Dr. Russell's presentation around the role of public health units, in Ontario in particular, and the role that they have in terms of informing the public, the Ontario public. So, we talked about signage, the need for signage, and so on, but we also talked about the need for culturally adapted information. Ontario, and Canada, for that matter, being as diverse as it is, we need to have that information transmitted in available-in a way that's reflective of our local communities.

One of the points that was also raised, that generated a fair amount of discussion, was that our surveillance system is really driven by the collaboration between the provinces and the federal government, and this highlights the need for ongoing systematic surveillance efforts in all provinces. So that, I think, is a point that was not lost on folks.

I have three more points to make. Underlying all this conversation was a need for more resources dedicated to surveillance. That was clear. We also poked our fingers at a couple of gaps that we see in surveillance, particularly in keeping track of those that have contracted the disease. One that became apparent is those that perhaps contracted the disease outside of Canada, have come back to Canada. Are we tracking, are we aware? Particularly any events prior to this being a notifiable disease in 2009, that was part of some of the gaps, and I have no doubt that there will be gaps that we will kind of further explore this morning.

Finally, a last point: Dr. Rudenko's presentation. She's from the Czech Republic, and highlighted the breadth of tick species that they are studying and monitoring, and my numbers may be slightly off here because I'm going from my own handwritten notes. She indicated that worldwide there are about ten different species that are involved in the transmission of Lyme disease, and I think that in our conversation, in our room, that sparked a lot of discussion around the implications that this has for us, and we haven't landed on that conversation. I suspect that that will be a recurring theme over the course of this morning, but certainly Dr. Rudenko's presentation was, as we say in French, quite impactful for us. So, I hope that I've done justice to the topic. I know that I will likely be open to criticism from the good folks that will be working with me in the Surveillance break-out. I will be happy to respond at that point. Thank you.

Dan: Okay, let's have Lise Hebabi now talk about guidelines and best practices, and given that you've worked with about 150 people to gather all that, that's a challenge. Good luck.

Lise: [13:47]

Thank you. Now, I'll just ask all 150 people to-no, no, we're not going there again, all right. So, good morning, everybody. What I did for this report, contrary to Alain, I didn't try to go through the whole afternoon, but I focused on the key messages that were raised at the end of the afternoon by the participants in the session, and I tried to organize them in a way that kind of eliminated duplication. And remember, I promised that I wouldn't include the recommendations that I'd focus on a description of the current situation.

An introductory comment, I guess, that I would make, is that it's pretty obvious-and if I do my job right, there will be no surprises in what I say here this morning. If I did it wrong, then I might be asked to leave the room. There are different stakeholder groups in this situation that are all coming from the situation from a completely different worldview. They're looking at it through a lens that makes them interpret what they see differently. And they also have different interests and different needs. So, I thought what I would do is frame the key messages within those groups. I've identified three. There are multiple others, but we really focused on three of them. And before I get into the human groups, some of the key messages were about Borrelia itself, and the disease. So, messages like Borrelia is not a typical infection; it's a complex organism, it changes over time, and it can't be cultured, and that makes studying it, working with it, healing it, very, very difficult. Co-infections are not well understood. Other modes of infections and ticks-and you know, Alain just mentioned the multitude of tick species as well-are not well understood, need to be fully discussed, and there are other ways of getting the disease that don't involve ticks, and what do we know about that, and you know, what are the questions around that? And then, again, to complicate things further, there are tick-borne infections that mimic or that cause Lyme-like symptoms, and that's also a source of confusion and difficulty in terms of really understanding what we're dealing with, here.

A key group, obviously, are the patients. Patients and their families want to be heard, and they want to be included. You have a sense of urgency, you need relief now, and the burden of cost, you feel, is squarely on your shoulders. Most of you are willing to help with research, at least that's what came up in the session, to participate in clinical trials, to give blood, to do what it takes to fix this. You're intelligent; you can understand the risks and work with your doctors on the best solutions for you. There are a lot of differences between cases, even if there are similarities, and there are also different needs at different stages, and that might be tied to how the Borrelia actually morphs over time, and the real issue seems to be in the later stages, and the confusion that there is around all of that. There was emphasis on a holistic approach and the importance of paying attention to things like diet, lifestyle, alternative practitioners, other things that might influence your ability to get well and stay well. And then, concerns around Lyme disease not being recognized as a disability, and the fact that the disease just causes excessive strain and emotional impact, and that you need validation and you need emotional support.

Researchers want to do good. They're not here to make people's lives miserable. They have a constraint that the science that they do has to be evidence-based. There are questions, however, around what is evidence. And there are some who feel that the definition of data might be too restrictive. You talked about qualitative datum not being considered enough, and that has to be balanced with enough rigour, and how that information is collected, so that it can be used as evidence for science. And remember, there was that conversation around-there's so much information, there's so many experiences and they're not being used, and why is that? Because we're not being systematic about capturing that information in a way that science can use it. So, there's a real opportunity there, is what I heard.

There is promising research being done. It tends to be happening in silos, which is an issue. And it's obviously happening too slowly for those of you living with Lyme disease. So, finding ways to balance those needs again. The combination of drugs seems to be a promising approach. We heard about research that shows really good results in in vitro research, and now the next step is, so, how do you further that research so that it can eventually lead to conclusions in humans? And a concern among researchers should be a concern that was suggested for everybody, which is antibiotic stewardship and resistance. So, you know, the risks of pervasive antibiotics, and not just from a resistance perspective, but also on the health of people who do use antibiotics for a very long period of time. Clear that we need research on diagnostic and testing, not just on treatment, and that we need interim solutions on both while the science advances.

Okay, one last topic: the doctors, don't want to forget the doctors. They want to do good, too. There's a need for more Lyme-literate doctors able to treat the disease. There are issues with the current clinical guidelines that constrain their ability to do good. The guidelines are not flexible enough; they overly constrain the freedom of action. "Doctors need to be allowed to practice," was one of the ways that this was said yesterday. The guidelines focus on the eradication of the infection, when functional improvement should be the goal. They're effective in the early stages, but not at later stages; there seems to be a clear distinction there, again. So, there's this evolution over time theme that seemed to come through yesterday afternoon, and the whole issue of the two-tier testing approach, which is only effective in a small minority of cases, and diagnostics not being accurate at 100 percent. So, hopefully I captured what you said, I'm sure there's so much more out there, and as Alain, I'll be here later this morning so you can tell me all about it.

Dan: Thank you. Let me invite Kathleen Connelly to talk to you about what happened in Education and Awareness. Kathleen, over to you.

Kathleen: [20:29]

Thank you, Daniel. Hello, ladies and gentlemen. So, we had a very passionate and, if I may say, brilliant group yesterday, both the participants…

Dan: Are they here this morning?

Kathleen: …I think I see many of them. Both the participants and the speakers, thank you. So, we also ended up talking a little bit about some of the themes in the other groups, but I will just focus, for this report, for what related directly to education and awareness. And I've organized this in two parts: one is sort of messages in general about education and awareness, and the second part will be some of the messages we thought would be important.

So, in terms of general messages, messages that are general in nature, there's a patchwork of poor information out there, there's a lot of misinformation, there's conflicting messaging. For example, you know the length of time a tick is attached to a person before it causes harm. So, what we need is 'persistent and consistent information', is an expression that was used. And across the country, consistent across the country.

There's real stigma attached to this disease and we're going to need sort of ethics, good ethics, and communication to address that stigma. The focus is too often only on acute infection, and we're going to want to make sure that we consider the chronic aspects in all of our efforts.

Messaging has to focus on prevention, and we must evaluate results. Like, are people changing their behaviours as a result of our information, education, and awareness efforts? And then, we also talked about how it would be good to actually kill the little critters before they do damage. I edited the wording a little bit.

Dan: That's a cleaned-up version compared to what I saw.

Kathleen: So, key messages relating to how to reach, and the whole issue of the state of awareness of physicians and health professionals. They're not well educated in this area. We've not been doing a good job at reaching them. We have to start in the medical schools, and the importance that that education has to include the notion of the importance of patients and patient preference. And then, physicians not only are not always well educated in this area, but they don't always have the information they need, which we've heard a bit. They're not, for example, aware of diagnostic criteria. You know, they think that only the textbook rash is an issue, they don't know which test to order, these are just some of the examples we talked about. We need to ensure that they have easily accessible, up to date information to make a clinical diagnosis. Many physicians don't even know if they're in endemic or high-risk areas. That's where the surveillance activities and communicating that to them becomes important. We can't just focus on physicians, but we have to focus on all kind of health professionals, you know, paramedics, pharmacists, nurses, to really include all healthcare professionals, in our efforts to raise awareness and educate. So, to reach physicians and health professionals, you know, we talked about a variety of ways: newsletters, guides, reference manuals, exhibits at really well-attended conferences, webinars that provide credits, use of apps, among a few. A specific idea that was mentioned was maybe including some education about this in, you know, how we have to renew our CPR as health professionals. That would be one way, a good example of one way of doing it.

And then, we also heard an interesting initiative, the Lyme Corps, which are students in residence that are trained to get the messages out about Lyme disease. These are just some specific examples that were raised.

When it comes to the general public, public awareness is low, and we need a cross-Canada mass media campaign, you know, that uses all the different multiple media; TV, radio, Internet, social media, signs on trails, signs in summer camps, at the Ys, just some examples, but something that really is across the country and age-appropriate, of course. Using comics was an example that was shown for kids. So, we also talked, then, about messaging itself, and I'm just going to give you a little idea of what came up there.

For a physician, the messaging has to include-it's got to be about tick-borne infections and co-infections. It has to include messages like, "You've got to be suspicious as a physician; don't rely or wait for the test results to treat that," was key messages from the group. Treatment must be individual and evolve with the disease. "Use combination therapy, don't give up on your patient," were some messages that were relayed.

And then, for the public, of course it would be what you'd expect, you know, they need to know how does transmission occur, what Lyme disease does to your health, what are some of the risks around it that are associated. People are not aware of how to protect yourself, how to remove ticks, you know, what to do if you think you might be infected. So, in a nutshell, education and awareness has got to be everyone's business, education and raising awareness are everyone's business. If we're going to do well here, we all have to take responsibility, was one of the key messages from our group (inaudible).

Dan: Good, thank you very much. Thank you very much. Okay, a few critical announcements: one is those of you who are going to be using the shuttle to get back to the airport at the end of the day, it's going to be leaving about 15 minutes after the closing plenary, so three-thirty, three-forty five, thereabouts. Secondly, many of you have said, "Look this is a great presentation, how can I get a copy?" All presenters will be asked to share their presentation. Some will say yes, some will say no. Those who said yes, somehow the Public Health Agency is going to make these things available. We don't know the medium yet, you know, we've got to look at, you know, is it the cloud, is it, you know, whatever, but to make them available to you. If they send them to you-whatever, they'll figure it out, but the idea is we're going to try and make as many available as possible. Thirdly, today, in the course of the day, for the sake of our WebEx participants, please be microphone-conscious. Your voice matters. When you get to a microphone, make sure that we can all hear you. And of course, you know, especially those people who are on WebEx, you know, when you're at the end of a line, every sound counts. So, your voice matters, and we'll ask you to do that.

At lunch, those of you who have special dietary requirements, some of you said, "Well, you know, I'd like to have access to gluten-free," we have it. So, those of you who don't need to eat gluten-free, don't touch the gluten-free. Keep it for the gluten-free people. There's enough sandwiches for everybody, okay? And we'll have that, same as yesterday, in the next room, all right? Gluten-free folks, am I representing your views well? Okay, good, good, good, good, okay.

Last thing: the process this morning that your facilitators will be inviting you to engage on, okay, is going to be this: It's going to be in two parts. So, if you're in Surveillance, Alain is going to be asking you the following question, he's going to say, "Look, if we look at surveillance, what's our vision of success for really great surveillance?" A few minutes to sort of talk about what does that look like, in your view. Let's sort of brainstorm around that, okay, then stop. And right after that, okay, what ideas or what steps should we take to move towards that? What ideas do you think should be considered in the development of a federal framework on surveillance, okay? So, it's the what-so, you can sort of see, you know, what do we want to achieve together, in terms of surveillance, as a case in point, and then how do we actually do that? What ideas do you think should be considered in the preparation of a framework, okay?

And by the way, many of you have said, "Look, there's some urgent stuff, we need to deal with some stuff now." So, please, please think in terms of what should be done now, in your view, in the short term. What could be medium-term stuff, and what could be longer-term stuff? But be clear in terms of what you think needs to happen now, okay, in your view. So, focus on that.

Lunch is going to start at noon, but we're going to be starting here at one. So, if your session's going on, and it's twelve-fifteen, don't worry. The food's going to be there, there's going to be enough, and if you want to continue the conversation, it really is up to you. But we're starting here at one promptly, okay?

So, on that note, I wish you a terrific morning. I would like to have an incredible afternoon, and this is the time to generate your ideas. So, have a great conversation, and we'll see you back here at one. All right.

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