Allergy & Asthma Misinformation in Popular Culture
24
August

By Adem Lewis / in , , /


Good afternoon, everyone. I’m Diana Royce, Managing Director and Chief Operating Officer of AllerGen NCE Inc, the Allergy Genes and Environment Network, which is hosted at McMaster University in Hamilton, Ontario. I’m pleased to extend a very warm welcome to each of the 78 registrants participating in today’s webinar. Now it’s my pleasure to introduce today’s presenter, Tim Caulfield. Tim is a Canada Research Chair in Health Law and Policy, Research Director of the Health Law Institute, professor in the Faculty of Law and the School of Public Health at the University of Alberta. He’s a fellow of the Trudeau Foundation and the principal investigator for a number of large interdisciplinary projects that explore the ethical, legal and health policy issues associated with a range of topics including stem cell research, genetics and patient safety as well as the prevention of chronic disease, obesity policy, the commercialization of research, complementary and alternative medicine and access to healthcare. Tim writes frequently for the popular press and is regularly interviewed by major media outlets on a spectrum of topics related to health science, the beauty industry and how these intersect with popular culture and celebrities. He’s also the author, most recently, of “Is Gwyneth Paltrow Wrong about Everything? When Celebrity Culture and Science Clash,” and Tim will soon be starring in a reality TV show entitled “A User’s Guide to Cheating Death,” exploring themes related to that book. On the subject that he’s addressing in today’s webinar, Tim recently published an article in BMJ Open that has already been downloaded 10,000 times; he also produced an educational video on this topic that you’ll find on AllerGen’s homepage. Tim has kindly offered to speak to us today on the marketing of dubious asthma and allergy therapies, and how people committed to science can best respond to this “selling of falsehoods.” We look forward to his insights and advice. Welcome, Tim. Thanks very much, Diana. Thanks to everyone for taking the time to listen to my presentation today. This is something that I feel really passionate about and that our whole team here at the Health Law Institute has been working on for many years, actually, and today I’m going to focus on… there’s so much junk out there, so much misinformation out there, about allergy and asthma, but I’m going to focus largely on on the world of complementary and alternative medicine – and Iwant to be clear, they’re not the only ones who are guilty, but this is where we’ve done a lot of our research recently and so I’m going to talk about some of the “noise” that is out there already, then I’m going to talk more specifically about the marketing that is happening in the complementary and alternative medicine space, and then I do want to just touch on how we got here: what’s happening; what are the social forces that are enabling this this “noise.” And then I do want to talk about what we, as a community, …how we can respond; what can the science-based community do to to make the situation better. It’s a tough situation we’re in, but I’m hopeful; so let’s forge ahead here. So we’re gonna start with pop culture. Now, a lot of the images you’re going to see in this presentation are actually the result of or part of a book that I’m doing with my brother that is coming out in the fall that Penguin is publishing, on a lot of the things I’m talking about today: on the spreading of misinformation. And my brother, who’s amazing, collected artists from all over the world to contribute, so these are all pieces of art that relate to pop culture and misinformation. But there is a lot of misinformation out in pop culture right now, where, if you look at things like, for example, how fake news is now being portrayed… in fact, we have a project right now, we’re exploring fake news and this is one of the worst headlines that we found, but it’s a really good example of the ridiculous kind of misinformation that is spreading out there. And as I said, this matters. It is having an impact. Despite how ridiculous this may seem, it is having an impact. Of course, there’s also a lot of misinformation out there that is in the more legitimate press; this was a a piece that was in The Washington Post not that long ago, talking about how to prepare for allergy season and it is just full of misinformation. You have advice in this piece: first of all, the science behind it is completely misleading, and then you have advice for the public about how you’re supposed to deal with allergy season: you’re supposed to avoid dairy, wheat and carbohydrates; you’re supposed to eat these these natural health products; and you’re to only wear natural fibers. The other thing that is probably most infuriating with this is that the person that was quoted as the authority is a well known anti-vaxxer called Kenneth Bock. So this is the kind of misinformation that’s spreading out there, and this is the Washington Post. Of course, you also have a lot of ridiculous misinformation that’s being spread from the alternative medicine community more broadly. This is an example that came out not that long ago. I don’t know if you guys saw this; this was recommendation from the British Chiropractic Association that women — well, all of us, not just women — we’re supposed to avoid wearing skinny jeans. This is real advice. This is real stuff. We’re supposed to avoid wearing skinny jeans because it would result in in a back pain and long-term back problems, and they even gave advice about how often you’re supposed to wear your skinny jeans — and the answer is you’re supposed to save them for special occasions. Of course, this is complete nonsense. I wasted a Sunday morning looking for any study to back this up and you can see on the right all the studies that I found in order to support this claim. But this kind of misinformation pervades popular culture. And we also are seeing of course a lot of marketing specific to CAM providers. These are just a few examples of the kinds of things that you see from complementary and alternative providers about allergy and asthma. This next one I think is a good example, where you have the suggestion that you should try an ionic foot bath in order to reduce the chance of getting allergy and asthma. I actually tried an ionic foot bath; it’s complete nonsense, of course, where you submerge your feet in water and then an electric current is put through it and it’s supposed to pull — this is a naturopathic clinic — it’s supposed to pull out all the toxins from your body. You have other examples like this, where you have recommendations… sort of the mechanism behind allergies; what’s going on; this is a naturopathic clinic in Vancouver that suggests that the reason that you have allergies: it’s a sign that your body is starting to accumulate toxins, which is absolutely ridiculous, right? And then the recommendation, of course, is homeopathy, which is like piling nonsense on top of nonsense. We have actually done a lot of research on this; a lot of research more systematically on what’s being portrayed by these clinics. So this is a study that we did a couple of years ago looking at what chiropractors market. We don’t know what they tell patients when patients walk into their office, but on their websites, on their marketing material, what do they say? They can treat — you can see here that that they say that over thirty-five percent, about thirty-seven percent, of them claim that they can treat allergy and a whole bunch of other things like bed-wetting and ADHD and things like that, with chiropractic adjustment. We also did a more comprehensive study, that was supported by AllerGen, where we looked at what naturopaths advertise. Now this one we we looked at naturopaths in Alberta and in British Columbia, and in Alberta at that time they were not regulated and in BC they were, and the interesting thing that we found was there was very little difference between a regulated jurisdiction and a non-regulated jurisdiction, which is kind of bad news, right? Regulation didn’t do much. But the number one thing we found that Alberta naturopaths offer is homeopathy. You couldn’t pick a more absurd thing to be your number one treatment choice with regards to allergy. We also found that allergy treatments and allergy testing is one of the most common things that that they provide, so you can see here that it was number one choice for naturalpaths with respect to allergy treatment and the number one choice, the number one service they provide in the context of testing and lab analysis. So this is a big deal. In the complementary and alternative space, allergy and asthma is a big deal. In our more recent study we tried to kick it up a notch, methodologically, and I’d like to thank my amazing team for helping with this, is that we looked at, agai,n online representations of how to diagnose and treat allergy and asthma by chiropractors. The 4 most popular complementary and alternative practitioners in Canada – chiropractors, naturopaths, homeopaths and acupuncturists — and what we did is we searched the web as if we were in (and there’s a way that you can do this methodologically) as if we were in each city, and we looked for the top 10 hits for each of these providers. We had a nice N; we had a final data set of four hundred, and what did we find? It’s not going to surprise anyone on the call; we found that the provision of services around allergy and asthma very common in this space; so with with naturopaths, over 80 percent, I think it was 83 percent, had some mention on their website advertising about diagnosis, treatment or a discussion of the efficacy of the service around allergy and sensitivity, and with asthma, very high numbers also. You can see with acupuncturists it’s almost 70; with chiropractors were treating asthma almost 40 percent. So again, really, we were surprised at these numbers, to be honest with you. We didn’t think it would be this dominant. And here what you can see, to drill down a little bit further, the kinds of things that are being offered. So we have, in the context of allergy treatments, about 75% of naturopaths claim that they have an allergy treatment, and with asthma we have over 60 percent. And the numbers with allergy treatments with chiropractors about 30 percent and almost 40 percent for asthma. So again I think the data — and this shouldn’t say “preliminary data”, by the way, this is final data — the data is is pretty, I think, stark. So what are the treatments that are being offered? We were lucky to have an allergy expert who was part of our writing team: Stewart Car, so we went through all these things but, look, it’s things like chiropractic adjustment, ionic foot baths, as I said before; homeopathy, vitamins and mineral injections. We’re not talking– Bowen Therapy — we’re not talking about things that, from from a scientific perspective, and very robust: IV vitamin C, etc. You can look down on that list and you can see that almost all of them are of questionable scientific validity. Some of them are ridiculous, like homeopathy. Others, I think, there’s not a lot of good evidence to support them in the context of treating allergy and asthma. And it’s important to note that these are often represented on the websites as efficacious. That’s important to note. This is not like “this is an experimental treatment; we’re pontificating here;” they’re often represented as if they are efficacious. Our numbers were very similar to numbers in other jurisdictions, which, again, was surprising: the degree to which that was the case. This is, just to give one example, this was a relatively recent study from New Zealand where they found that 35 percent of chiropractic marketing suggested they could treat, use spinal manipulation therapy to treat allergies, and 39 percent for asthma. So, very similar numbers to what we found. There’s also been less academic studies that have been done; this is a really interesting piece by Carly Weeks of the Globe and Mail; I don’t know if you guys remember seeing this; she actually did some pretty good work here. She looked at over 300 regulated naturopaths to get a sense of whether their marketing met the standards of the College — of their College. So you know I think there should be a higher standard, but they found that roughly half didn’t even meet what I think is a relatively low standard for the College. So there’s a lot of nonsense out there. So what’s going on? How did we get here? What are the social forces contributing to this? Look, there’s no way I can go through all of these forces right now; you could give a four hour lecture, but in this era of fake news and alternative facts there’s so much that I could look to. I do think one that of the things that’s really important, and maybe people on call have heard me talk about this before, is public trust. I often joke that I get a lot of hate mail; I’ve got some very recently, actually: a brown envelope was waiting for me on my desk and it was filled with a 12-page rant, and what do I hear? I always hear this public trust issue: we can’t trust scientists because they are in bed with industry; they can’t replicate their work… and this problem, as this headline nicely illustrates, this problem is becoming more dominant. We’re starting to see this this problem that the science that there are issues with the scientific process being portrayed in popular culture, so it’s creating a real tension. So I think this is something that we as a scientific community need to be sensitive about, because it’s been portrayed, actually, as a war on science. It’s something that is eroding public trust in science; it’s eroding public trust in science-based practitioners. So this is a problem that we need to address. There is also a the problem of what I call this problem of “all knowledge is relative.” This is a wonderful piece by my friend Alan where he talks about this tolerance that the academic community and scientific community has had for alternative facts. Now it’s funny because we have put up with the idea of alternative facts in the health community for decades. I really do think that we put up with this idea that all knowledge is relative, and that’s simply not the case. And Alan — again, in this really great piece — he suggests, and I’ll tweet it out after, he suggests that this notion of truth as disrespect, the idea that we are (and I face this all of the time at public lectures), the idea that we’re talking about what the science says about reiki, about naturopaths being of a treat allergy, is disrespectful, because there is a different perspective that’s relevant here. That enables the spreading of bunk, I believe. And I do hear things like this, you know, the idea that homeopathy may be shown not to work now but we have to remember there’s other ways of collecting knowledge and in the future it will be shown to work. I think that this thinking really results in a erosion of critical thinking that is problematic. And this erosion I think enables people like this, right? It enables people like Dr. Oz to make these claims about things like homeopathic medicine that is completely absurd, but because we’ve created this space that allows this, this tolerance, I think is that people like him flourish and alternative facts in the health health sphere flourish also. The other thing — again, the people on the call may have heard me talk about this before — is the problem of quackademics. I’ll go through this very quickly; the problem of alternative facts, this idea of quackademics, I think is also enabling it. We see universities throughout Canada again providing room for these kind of alternative approaches to health. Now I’m not saying that you can’t do research on complementary and alternative medicine ;on the contrary, I think that this is a social movement that requires people to study it. Look, I study it. I even have a CIHR grant that is relevant to this, but the problem of course is when it’s presented in an uncritical fashion. We see this this kind of language on university web sites throughout Canada; this idea that you know… these are these are quotes from universities across Canada where this stuff is presented in an uncritical manner, as if it is efficacious, and I didn’t want to go into too much detail because I they want to pick on any one university, but you could almost do any university in Canada, where you have these websites talking about Reiki practitioners and homeopathic medicine in an uncritical manner; I’m not saying that we can’t study this stuff, but to present it to the public as if it is efficacious and science-based is problematic. This next thing is I think one of the best examples of it. I don’t want to pick on MacEwan University, that’s very close to me right now, it’s just across the bridge from my office, but this is a relatively new University and you can get a certificate in acupuncture from this University. Again, I don’t necessarily have a problem with that, although I maybe have a little bit of a problem with that, but what I think is problematic is it’s represented again in an uncritical manner. So it this is a direct quote; there’s no alternative view presented on the website. “Acupuncturists work through the body’s energy flow” — as if there really is a life force energy that flows through our body and “an imbalance in that life force energy causes disease” — that’s what it says on the MacEwan University website. Now this matters, you guys, because homeopaths and naturopaths use this kind of legitimization by the universities to market their products and that is really problematic. And it should not be a surprise, then, that we see studies like this, that found that many people have concerns about things like vaccinations and just over 17% agreed with the incorrect statement that alternative treatments can replace vaccinations. Well, when you have universities sort of legitimizing this, that seems more plausible, right? You also see things like this; I did a quick scan of alternative practitioners offering homeopathy as an alternative to vaccination, which is just insane, right? So look at the first one, where you say homeopathic injectables are an option or a way to replace vaccination. We see the same thing with the middle one and the last one also, all arguing that homeopathy can actually replace an immune shot. Now this matters. Not only is it that you have this kind of marketing out there, but there’s evidence that shows that exposure to this kind of nonsense impacts things, for example, like vaccination rates, intention to get vaccinated, as one relatively recent study showed. Now, to be fair, this is a little bit of a correlation not causation, but there’s certainly an association between complementary and alternative practitioners and vaccination rates. There have the numerous studies that have shown this. There have been studies that have shown that having a preference for alternative practitioners is correlated with a negative attitude towards vaccination, and this last study that was done by Kumana Wilson’s team — he does great work out of the University of Ottawa– went so far as to suggest that the use of naturopathic care should be viewed as a indication of risk with respect to vaccination rates, and they feel that the data is robust enough to support that. Now what often happens – I have experienced this personally — what often happens is the complementary alternative practitioners come back and say, “Hey, we are evidence-based.” Well, I’ve done a lot of research to show that that’s not the case, and, anecdotally, I thought I’d take a quick look at some of the naturopaths in the Edmonton region, and this is what was on their websites. I did this stuff not that long ago, in September, and it’s just a sea of bunk. Just a sea of bunk. This is not evidence-based stuff; on the contrary. I just put up the stuff where there’s no kind of debate that this is nonsense. You know: homeopathy is nonsense; detoxification is nonsense; colon hydrotherapy is nonsense, and potentially dangerous; IV therapy: complete nonsense. This is the core of their practice and this is what is being offered. Social media of course is playing a big role here. Social media, and our own research has shown this, is allowing people to spread this bunk rapidly around the world. Social media serves as a kind of echo chamber, where people can find like-minded individuals and allow that to sort of build momentum. This is one study that just shows the degree to which that is the case. This is a study that we did. We’re trying to study the impact of social media in a lot of these these spheres. This is a study we did on on chiropractic. It was a YouTube analysis and and Sandro Marcon, my colleague, deserves all the credit for this; he came up with the method. I just wanted to look at how YouTube represented chiropractors. He said, “Well, let’s look at at the comments section; how people argue about this.” And the first thing we found was that the discussions, which were much more civil than we thought, in the comments section — so that’s sort of a plus; people can have real discussions in comments sections. And by the way the N was huge; we had a very nice sample size. The other thing that we found that was fascinating, and again sort of supports what people would think intuitively, is the people arguing for chiropractic use anecdote to support their position and the evil big pharma industry to support their position; people who are against chiropractic (no surprise here) used evidence, and pointed people to additional literature; there’s often a link attached to their argument. This next study we did on Twitter and how spinal manipulation therapy was discussed on Twitter, and again a really nice N here. We collected over 30,000; we analyzed over 20,000. What we found was it was almost entirely positive. There’s almost no skeptical voices in this discussion, talking about what the evidence actually says, and I’m going to come back to that at the end. So what can we do? How can we move forward? What is next? What we want to do, of course, is look at potential regulatory tools and policy tools that we can use to sort of make the situation better, if we can at all, right? There are regulatory responses that we can use. I think there’s truth in advertising, that we should use more often; we’re starting to see this in other jurisdictions. In the United States, and this is a wonderful move, this is a pre-Trump move, we had the federal trade Commission – I guess it was just after Trump – the Federal Trade Commission actually came out with a statement saying that if you are going to market homeopathy, you must put on the label “this does not work,” which is a marvelous move, and entirely accurate. I would like to see more of that; you know, more aggressive action around truth in advertising, and that’s something that this community can help to enable. I think that the colleges and the professional regulators need to get involved. There’s often a regulated professional involved in this treatment; let’s get the regulators involved. We need to push for more science-based standards of care, and the other thing I’d like to see is trusted voices, like professional organizations, like Health Canada, put out policy statements about what the science says around these things. Of course we should have better science literacy, and that is really teaching more than just the scientific facts, but teaching about the scientific process. We need creative communication strategies, using narratives and storytelling to communicate, because this is why pop culture so powerful, right? They’re using these stories to to talk about… they’re powerful anecdotes; well we have to leverage that, too, and I’m not talking about fighting anecdote with anecdote; I’m talking about using storytelling and creative communication strategies to get across the good science. The other thing that we need to do is push media to avoid false balance. And we saw that in that Washington Post article, and to talk about what the weight of evidence says on any topic. So there’s a lot of evidence to suggest that false balance – that is, using some bogus position, perhaps a homeopath vs real science – that’s problematic, and just being exposed to that noise can have an adverse impact. So we want to use a weight of evidence approach, and there’s some evidence that using a weight of evidence approach can change people’s minds. And in addition to that, of course, I think we all need to get involved; we all need to become aggressive communicators. One problem is that regulating alternative practitioners isn’t easy. We’re seeing a lot of movement in Australia and New Zealand; they’re getting more aggressive on misleading claims, for example, in those jurisdictions, and we’ve seen a little bit of movement in Alberta, in Canada. So, for example, in Alberta the government pushed the naturopath’s college to investigate a naturopath that performed, I think, poorly in connection to the the well-known story where an individual died – a child died – but the naturopathic college cleared them, which really shows how difficult this is. Can you have a regulatory body that is not science-based trying to regulate their practitioners? Well, if you do that, the regulatory standards are not going to be science-based. But still, there’s a lot of different ways that we can get involved. There are these well-known whistleblowers that have come out to talk about how bogus all this stuff is; I think we need to encourage that, and enable that, and I do think that we can use other tools. We’ve seen criminal and civil fraud cases being brought very effectively in this domain. But of course the big thing, I think, for us on the phone is community action. Let’s call it bunk when it’s bunk, and I think that can be very powerful. There was a study that came out very recently that shows that this can work; it serves as kind of a public inoculation against misinformation. By sort of setting people up, making people sensitive to the idea that this information may be inaccurate, can actually work. Now the effect size wasn’t huge, but there was something there, and it really did cause people to be better critical thinkers, and I think that that’s what we, as a community, really can do; that, ultimately, is going to be the most powerful tool to enable people to be critical thinkers. So I’d like to end by saying thank you; thank you to all the artists involved in our project. They really are amazing individuals, amazing collaborators, amazing artists, so it’s been privileged to work with them, and of course I’d like to thank all of my funders and all of my colleagues at AllerGen for being so wonderfully supportive. So thanks very much, and thanks to all of you for listening to me. Well, thank you very much, Tim, for an evidence-rich, passionate and engaging presentation. Delivery aside, that was an illuminating and in equal parts unnerving review of the misinformation circulating on the subject of allergy and asthma treatments, among other types of treatments, and I’m sure our audience appreciates the tips that you’ve offered us on how to stand up for science in the face of bunk and charlatanism. So it is now my pleasure to open up the floor to questions from the webinar participants; and, webinar participants, I encourage you to take full advantage of Tim’s availability and expertise by asking questions and seeking his advice and comments on issues raised in his talk, as well as other issues that he has addressed in his research recently, and his other AllerGen research. So, Tim’s happy to answer questions. Tim, I have a question for you about this issue around sort of the “rock stars” of misinformation, and we know who they are, how do we create rock stars of science, and is this new position — what’s your thoughts around the role of this new chief science advisor for Canada, this position that will be established, and what role should our tri-council leaders play in getting out there and influencing the dialogue and really being those people who are on the front line of supporting a science and evidence-based view of the world. I think they can do a lot. I do think that, as I said earlier, I would like to see entities like the tri-counsels, like CIHR, even SSHRC, NSERC, coming out with statements, so if they see something that they know there’s no science to support: produce a statement about it, and we’re actually seeing that happen in the United States more often. For example, the FDA put out a statement about about cryotherapy, which is another thing that’s just completely absurd, and we’re starting to see statements about IV therapy – again, completely absurd – and there’s a little bit of research to demonstrate that that can have an impact; that it can shift the dialogue, if a trusted voice is at that play, but again we need to be really careful; a trusted voice for the public is independent, doesn’t have a hidden agenda. Yes, there’s always going to be people that say that the CDC and the World Health Organization have these hidden agendas, but I think that it can have an impact, but it also goes to how important it is to keep those entities as independent as trustworthy as possible – that should always be, I think, paramount, and it’s so important now more than ever. The other thing, I think, that needs to happen is that universities need to support science communication. And again we’re starting to see that; you know, the University of Alberta has been awesome to me. They’ve let me have this kind of strange career, so we’re starting to see a shift there, too, but it’s time-consuming, it often doesn’t come up in FEC, the faculty evaluation process, so I think that we need to really see University… not everyone is going to want to do it; not every scientist is going to want to do it — but I think we really need to encourage those that really do want to get involved, and of course entities like AllerGen, they have already been involved and I think that’s fantastic. Okay, thank you, Tim. Marshall, back to you. Thank you. I have a number of questions. The first I’ll read is from Iva Chung, who asks “How do you regulate CAM without inadvertently legitimizing it?” Yeah, this is a fantastic question; it’s one that I’ve been stewing on for a very long time; in fact, I justtweeted a piece that we wrote not that long ago. It’s really challenging, because if you talk to the ministers of health, and about how the opportunity to talk to people, for example, in Alberta health about this, and in Health Canada, too, they’ll say they have to do this for safety reasons, and I understand that; so let’s say, “Look, we’ve got to do it for safety reasons; so there’s not complete quacks out there – that we have some kind of control,” but the problem is as soon as you do that, as she points out, you are legitimizing them, and then what happens is they become this legitimized entity, and it becomes much more hard to regulate them, in a way, I know this from anecdote, and I have to be careful about how I talk about this, but it becomes much more difficult to make claims about them because you are insulting a profession. It becomes much more difficult to make truth in advertising claims against them because they can say: “Look, we’re a regulated health regulated health body; therefore, we should be able to say what it works and doesn’t work within our own sphere.” So I think there are real challenges; so here’s one suggestion, and I’m just starting to think about this, when it is — like naturopaths, like homeopaths – to be honest with you, I’d like to see a lot of these people just, the whole profession, just go away, right? You know, I don’t think we need homeopaths, for example, and I just don’t like to see the provision of unproven therapies, but some people have suggested perhaps we need a meta- regulatory body that enforces a science-based standard. So if naturopaths say they’re science-based, then they should be held to a science-based standard. They can regulate their their professions within their own sphere, but there should be a regulatory body that oversees them to ensure that those standards are science-based. Of course, if you had that, I don’t know what they could provide, because most of the stuff, most of their profession is based on unproven therapies. Great, thank you. Sharmila Sousa – sorry if I have mispronounced your name – I’ve just unmuted you; please go ahead. Hi. Thank you very much for that talk. I just wanted to ask something very quickly because here in Brazil very recently we had the issue with the phosphoethanolamine controversy for any cancer treatment. It actually occurred here in my home city, and I was just thinking that what if we developed studies to investigate the placebo effect, and try to get evidence on how does that actually happen and give people data about other things that they think… So I think i got the spirit of the question – and I apologize; you were breaking up a little bit. So the placebo effect is fascinating, and I’m actually thinking of writing a piece on this right away, because that’s often held up for the advocates of CAM. they’ll say, “Well, there is a placebo effect,” as if the rest of us don’t know there’s a placebo effect, right, which is one thing i find interesting. Of course, we all know there’s a placebo effect; in fact, a lot of these treatments are placebo theatre, right, that’s how they work. And absolutely, the possible effect can be powerful, and as people on the line know, there’s a lot of interesting studies around the placebo effect – there’s some dispute about how powerful and how enduring it is — but it’s real, right? So the question then becomes: do we create professions, right? It’s almost like we’re lying to the public; we’re creating this theater in order to enable the placebo effect. I think that that’s not a sustainable position, that science-based is sustainable; that’s not a sustainable position. I think we have to be honest, right? And the other interesting thing about the advocates of CAM that turn to the placebo effect as a justification – you know, let’s be clear about what they’re admitting; they’re admitting that their therapy doesn’t work, beyond placebo – which is pretty remarkable, right? And I’ve actually had CAM practitioners come back to me and say, “Well, there’s a placebo effect, right?” So you’re admitting that it doesn’t work, and it’s only placebo effect, and at some level there has to be deceptions and lies — yes, there’s been a study that suggests the placebo effect can work even if people are aware it’s placebo, but again a very small effect size; one or two studies; they’re not really sure if that is going to be replicated; but at some level we’re talking about deception, which I don’t think is sustainable. Should we be studying potentially effective CAM therapies? I think if there is scientific plausibility behind it; if there are other studies that suggest a mechanism of action that may work: fine. I and reasonable people can disagree on this. I have a problem when we study when a university studies things like homeopathy. We don’t need to study this anymore; it’s scientifically absurd and there’s no evidence at work, and I I’m afraid that if we study it you legitimize it, right? And as people on the call know, you run a clinical trial and the data can go a lot of different directions and there could turn out to be a positive effect, and that’s going to be jumped on by homeopaths to prove that their stuff works. Very good, thank you. Next question comes from Joel Minion who submitted it in written form – thank you, Joel – and he asks: I just finished reading Allie Russell Hotchfield’s book, “Strangers in their own Land,” a sociological look at right-leaning communities in Louisiana. She found high levels of mistrust in regulatory bodies in many communities, so what might be the unintended consequences of increased regulation? Yeah, I think that we’re already starting to see that – again, really great a great point – and I think we’re already starting to see that in the context, for example, of stem cell research, where there is this perception… where there’s a push for the FDA and Health Canada to get more involved in the provision of unproven stem cell therapies, and there is this perception among some in the community that that increased regulation is part of a conspiracy theory, right? That they’re trying to keep efficacious treatments away from people because they’re in cahoots with big pharma. Also there’s this perception that it’s just a big bureaucracy – that there are these efficacious treatments out there that are being withheld by government for a whole host of reasons. So, I do think that this is a challenge. And we’re also starting to see it with with natural products. Look at what’s happening right now in Canada where we’re trying to tighten the regulation of natural health products, and you’re already starting to see some of this conspiracy language pushing back. So my answer – I have a lame answer for this – is I think we have to look long term. I always say this – maybe this is wishful thinking – I like to believe that science eventually wins. You lose these battles, and you lose a particular kind of polarizing debates, but long-term I think eventually science wins, and I think that appropriate regulation is a long-term game and I think that we need to implement this in a way that tries to minimize polarization, that talks about what the science says – it talks about the actual justifications for it, the scientific justifications for it, and at the same time trying to explain that we’re not trying to withhold efficacious treatment. I think if we keep leaning on science and what the science says , and the scientific process, I like to believe – perhaps naively – long-term will win. Okay, thank you. The next question comes from Curtis Dumonceaux who wrote: “How do we respond to people who are obviously anti-science anti Big Pharma, etc.” Another great question and there’s this fascinating body of literature emerging about how do you change people’s minds, right? And its really, really, really difficult. So I think the distribution of opinion is often distributed a bell curve, and we have people at the tail-ends, and there are people that are just the conspiracy theorists; they think that science is always corrupt, and they think that Big Pharma has their hands in everything; it’s going to be very difficult to change their minds. I think so. What we need to focus on – and I’m contradicting myself – short-term is the bulge in the middle. A lot of this research has been done around anti-vaccination, but it’s a good model, because people are on a continuum; you have the hardcore anti-vaxxers, but that’s actually a small community. It’s the ones in the middle; it’s the ones that are perhaps vaccination hesitant, or they’re becoming worried, or they’re being influenced by these narratives: that’s where we need to – short-term anyway – I think focus our energy, and there’s some evidence that’s a good choice; that you can change people’s minds. You can nudge them in a particular direction if you use the right strategies. I don’t think we’re ever going to get rid of these conspiracy theorists; we’re never going to get rid of the people that are anti- everything. What we have to do, I think, is create a foundation that ensures that that community doesn’t grow, and that we have tools to keep the bulge in the middle of that bell curve distribution moving towards science. Great, thanks. Next question comes from Iva Cheung, who asks: “How do you balance the issue of indigenous cultural safety and Western medical science?” This is perhaps one of the toughest issues in the context of complementary and alternative medicine. I think, despite perhaps even my tone during my presentation, I think that we can do this debunking with respect, and we can call it bunk when it’s bunk in a way that is still respectful of different perspectives. I fall back – and maybe this is cheating on my behalf – but I I always frame it this way: you’ll notice the things I picked: I picked homeopathy; I talked about detoxing. Homeopathy is a German practice and it’s interesting because people say, “Well that’s disrespectful of a different culture,” right? I’m being disrespectful to 1840’s Germany, or maybe 1870’s Germany? I don’t understand what… It doesn’t change the science. Detoxification, where’s that coming from? Largely from Hollywood, but that’s another example. And these are things that are clearly bunk and what I fall back on is that if it’s being represented as science-based, right? If it’s being represented as science-based, it’s fair to critique it, even critique it aggressively with science. If someone’s coming forward and talking about being a naturopathic healthcare provider because you believe in a different philosophy; you believe in a vitalistic view of nature – and, by the way that’s the core of naturopathic medicine – you believe in this life force energy; if you present it as a worldview, as a philosophy, I’m less concerned. But increasingly these things are being portrayed as science-based. I think we can we can still respect native traditions of healing; we can still respect all traditions of healing in a way that allows us to still talk about what the science says. Okay, great. Next question comes from Dawn MacArthur, who wrote: “What do you say to people who say: “How do you know it’s not real if there’s no evidence?” Yeah, this you hear all the time, right? This is a very common claim. Well, for a lot of these things, there is evidence, right? And that’s often overlooked. When you’re talking about homeopathy; when you’re talking about Reiki; when you’re talking about a lot of these – detoxification – there is evidence, and not only that: there’s science that we can turn to, and I try to do that. In addition to that, this idea… Sometimes I try to use absurd examples, right? “Show me these studies that flying carpets don’t work,” right? Do we need to have a study to show that flying carpets don’t work? Because many of these things are completely scientifically implausible, so I think part of that goes to the complexity of the science literacy challenge. So often – and I want to be careful here not to overgeneralize – but often you get the sense that people perceive science as a list of facts, and if one of the facts is wrong, science is wrong – and I get that all the time, too. Like, “We used to believe X and now we believe Y, so clearly what you’re saying about homeopathy is wrong.” That’s not how science works, right? Science is a process and it is a way of seeing the world, and I think there’s a little bit of evidence to suggest that using those kind – and it’s hard to study this in a robust manner, by the way – but using those kind of strategies can help change people’s minds – not everyone’s, because we have that continuum of belief, as I said before, but it can change people’s minds. Okay, very good. One more question; this comes again from Iva Cheung and there’s a bit of a statement and then the question, so here I’ll read it all: “A lot of people turn to CAM when they feel let down by conventional medicine. CAM practitioners are quite good at making people feel heard and cared for in a way that conventional medical professionals sometimes do not. Do you think these efforts to improve science literacy must be complemented by investment in improving patient-centered care?” Absolutely, and what a great question to end this webinar. Earlier I said we should study CAM and we should be sensitive to this phenomenon, and this is one of the reasons. There’s some evidence that suggests this is exactly why people go to CAM providers. Now I’ve actually been to many CAM providers because I think I should experience this; and she’s absolutely right, you know: The naturopath I went to spend 45 minutes with me; she was incredibly professional; she looked into my eyes; she listened to me; and then she provided me with treatment recommendations that seemed tailored to my needs. Of course, it was vials of water; she suggested I buy a whole bunch of homeopathy from her. But I completely get it. It was a very positive experience. In fact, I often say this: every single CAM provider that I’ve went to – i have got cupping; I’ve got acupuncture; I went to a naturopath; I’ve done detoxification – almost every single one of those experiences has been positive. And not all my experiences with the conventional health care system has been very positive: you feel rushed; you feel like you are a number. So, yes: I think we can learn from this. I think we should learn from why people are interested in CAM, and why they’re turning away from conventional medicine, why they don’t trust these traditional sources of cienstific information anymore. There are important things that we can learn, that are relevant for today’s issues, but also for how science is going to be integrated in the future. Tim, thank you so much for this extremely informative session, and thank you to all of our webinar participants for attending and for your thoughtful questions and contributions to this discussion.


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