femfacts
19 Jun 2019

Looking for a professional opinion on a health topic? Here you can ask 11,000 experts

How to navigate information about health and science online? What are the most common myths about women’s health and how do they spread? We ask Tamar Wilner, a misinformation advisor at Metafact.

Tijana Cvjeticanin
Tijana Cvjeticanin Istinomjer, Bosnia and Herzegovina
Looking for a professional opinion on a health topic? Here you can ask 11,000 experts  - NewsMavens
Tamar Wilner. https://tamarwilner.wordpress.com/

Tamar Wilner is a journalist and academic based in Texas, USA, with a special interest in topics like fact-checking, media literacy and media misinformation about health and science. She is also a member of the advisory board of Metafact, a website with a novel approach to fact-checking that’s perhaps best described as “expert crowdsourcing”. Metafact was started in 2018 by climate scientist Ben McNeil and two computer engineers, Ernie Lie and Barry Jiao. It has so far amassed an impressive pool of 11,000 experts who weigh in on readers’ questions about health and science.  

Tijana Cvjetićanin: Can you introduce Metafact to our readers -- what is it and how does it work?

Tamar Wilner: Metafact is a fact-checking website about health and science which allows people to ask questions that they have about health and science topics and get answers from experts in those fields. It connects people with experts and give their points of view and explanations, but it also synthesizes their responses. So if some experts reply “yes” to your question and others say “no”, you get an average which shows how much agreement or disagreement there is on this topic.

TC: So, in some way these answers also tell you if a scientific consensus has been reached on a specific issue, or if it’s something still being debated in the scientific community. This is rather different from what you find in most fact-checking projects.

Yes, I think the emphasis on getting the answers straight from experts and focusing on those expert answers is a little different from most fact-checking operations. If they’re writing about health and science most fact checkers consult experts, but the way it’s presented is quite different. It would be written in a typical news story style, weaving together some paraphrasing and some quotations of the experts -- which is useful, a lot of times that can provide the answers that people are looking for. But sometimes people want to have those answers directly from the experts. And having a consensus score on top of that is an added benefit.

TC: What questions do people ask which are specific to women’s health?

One question that got a lot of attention on the website was “do routine mammograms save lives?”. That’s a very interesting one, because there is some disagreement -- and it’s very nuanced. Of course, in many cases, mammograms have saved lives. But the question is, if there’s a particular woman who’s getting a mammogram, is that likely to save her life, or could it just cause a lot of anxiety, or maybe false positives, or even [lead to] procedures that she doesn’t need?

Those are interesting questions, because the recommendations for when women should start getting mammograms have changed recently. So this is an issue where the science is in flux. For example, I’m 40 and used to be told to get regular mammograms [at that age] , but when I recently went to the doctor, she said that they’re not recommending that anymore. Now I think it starts at 45 or 50, depending on various predispositions that you have.

So, it’s an interesting case where we assume that more testing is always a good thing, but sometimes testing can be a negative thing, and we need to balance the pros and cons.

There have also been interesting questions about the HPV vaccine. Of course, both men and women can get the HPV vaccine, but it’s of particular concern for women. That’s something we’ve seen some misinformation around, so it’s important to try and combat that misinformation.

Average scores on MetaFact for questions “Is the HPV vaccine safe?” and “Does HPV cause cervical cancer?” (Source: Screenshot)

TC: And, from your experience, what would be the most common misconceptions about women’s health?

There’s so much misinformation related to cancer and the supposed cures or treatments that people can do themselves. A lot of that is targeted at women with breast cancer.

I’ve done some research on Pinterest, for example, which is one of the biggest social media sites in the US, I think it has about 250 million active users. It’s used much more by women [than men] and I’ve seen plenty of breast cancer misinformation on that platform. That’s probably one of the major topic of misinformation when it comes to women’s health.

TC: What type of misinformation is circulating about that? False advice on cancer treatments?

Yes, things like essential oils and herbs, different plants and remedies that you can use, “superfoods”… There are claims about stuff that’s supposed to prevent cancer and stuff that’s supposed to treat cancer -- I suppose that the “prevention” stuff is less insidious because, if it tells you that eating beets will prevent cancer, the worst thing you do is eat beets and your pee turns pink; no harm done. But then you see claims about plants and oils that are going to “treat cancer” and a lot of times those posts don’t necessarily say “use this instead of chemotherapy”, but that is implied and some people will take it that way. If you are told “this is safe, it’s gentle, it’s natural”, this encourages you to take it, thinking it’s not going to cause any side effects. And, of course, chemotherapy has a lot of side effects and people are very weary of it for that reason. What you mentioned earlier about baking soda, I’ve seen that also in the US.

But I think it spreads more through interpersonal networks than out there in the open. Unfortunately, sometimes the research we do on misinformation is hampered by what we can access. A lot of times we’re not accessing those nooks and crannies of the internet where people can share misinformation. It works through a word of mouth and spreads that way.

That’s one of the problems with quacks, doctors who people go to - and spend a lot of money on - for some kind of alternative treatment. I wrote about this doctor in Houston who has a treatment with no evidence behind it, that he keeps giving to people to ”cure cancers”. There are people who swear by him, wo share their stories on private networks and websites where they encourage other people to go visit him. So if you hear about this doctor and you google “Stanislaw Burzynski”, you will find the website where people say “He’s great, he cured my cancer, you should go visit him!”. But you can’t just accidentally stumble across him -- which is good, I guess.

TC: There are a lot of examples when it’s hard to determine if something is true or not: for example, an unverified claim that menstrual cups can serve as “fertility devices” which was never tested, but it was backed by a medical doctor, or claims about dandelion root being a “cancer killer”, where some research has actually been done, but the conclusions presented in the media were way overblown. What would be your approach in such cases where it’s not immediately clear if something is misinformation or not?

TW: When I’m doing content analysis and classifying things as misinformation, sometimes it’s hard to make that call because it would say something like “this oil kills cancer cells”. Factually, that is correct - there’s a study that they’ve done in a laboratory and, in a dish, it does kill cancer cells. But the implication of that post is “take this [as cure for cancer], it kills cancer cells”. So I don’t know if you call that an exaggeration, or what do you call it. It’s something that’s really difficult to classify.

But when you’re trying to classify misinformation for the purposes of research, it’s different than what you are addressing the public. If you’re talking to the members of the public, it’s important to just emphasize the scientific process. Everything we know about treatments and the reason we have effective treatments, or treatments with less side effects, is because of research. Every decision - well, hopefully every decision - a doctor makes when you have an illness and they’re prescribing you something, is based on research. So that has to be our standard when we talk about what’s true or not. I guess I would say up front - “there’s no research to support this, but in the future maybe there will be, here are some indication of what doctors are saying about it.”

There’s a checklist from Health News Review of ten things to think about when you read an article about a new study that I would give to people, like: “Was it conducted on animals or in cells? What was the sample size? Have there been multiple studies?”, etc. It’s difficult because there’s probably many more you should ask, but even these then are hard to communicate.

TC: Scientific consensus on vaccines is pretty sound and that’s also demonstrated in answers on Metafact. So why are things like HPV vaccine being questioned and doubted so much -- what do you think informs these questions?

When people ask questions on Metafact, there’s some free space where they can write about where they saw the thing they’re asking about, why are they asking about it, etc. So we do see examples where people saw some information online that they’re curious about, or they are doubting it and trying to figure out what to believe. And sometimes it’s just everyday life that suggest questions to people. For example, there is one where we’re still waiting for enough experts to answer, but which had a lot of interest, about whether chlorine in pools is safe. Because people go swimming and there’s this chemophobia that a lot of us have -- certain chemicals do cause terrible side effects and people don’t understand enough about what chemicals they should worry about and what chemicals are fine. So everything kinda becomes suspect and you start to question “What don’t I know about this chemical that’s in my everyday life and how that might be affecting me?”.

TC: So, if someone who doesn’t have a scientific or medical background has these doubts and wants to get health information online, where should they go for trusted sources and how do they recognize which ones to avoid

It’s a difficult question to answer. When you look at the site which claims to be medical authority, how do you make sure that it is independent and has highs standards for evidence? There was a kid in the University of Sarajevo yesterday who said “The problem today is that we don’t go to books anymore. It used to be that you would use books as resources and you’d know that you would find the right answer”. And I said -- well, kind of, because there were always bad books, too. I used to buy conspiracy theory books for laughter.

But it is true that there were sources like encyclopedias and certain kinds of reference books, that we could depend on. Today we don’t have agreed upon sources that we depend on like we had with lots of books. So what I’ve been doing is basically recommending specific sites to people -- the site of World Health Organization or, for more day-to-day health concerns, things like WebMD and Mayo Clinic; the Cochrane Library where they synthesize a lot of studies to say what is the state of science on a given topic, etc.

It feels imperfect and it feels like telling people what to do and what’s authoritative, but maybe we should do more to just encourage people to use sources like WHO, which have unbiased information.

TC: But a lot of people who believe conspiracy theories would, for example, be distrustful of WHO and see it as a biased source if they believe that their information is influenced by some hidden agenda. We see a lot of that when it comes to vaccines or cancer treatments… What’s a good way to talk to them?  

There’s no short answer. Maybe just try to get people to think like “You think this has influence? Everything has some influence. The question is what is based more on facts and science.”  

Any website you go to for medical information is always a part of an organization, a hierarchy of people making decisions on the top that affect what gets shared further down. But a source like WHO has safeguards in place to insure that those kinds of political concerns don’t affect scientific decisions. And the science is based on what’s been peer reviewed and has been considered by a lot of different people working together and trying to reach consensus. If you compare that to something like “Natural news” a lot of times we don’t know where the information is coming from, we either don’t know the interest of the person who runs it, or we find out that their interest is counter to our interest because they’re trying to sell us something, not just trying to provide information. And they’re not relying on the peer review, the collective process by which science generates its findings.   

TC: Is that something that people get from Metafact, more insight into the process of how scientific knowledge is built?

Yes, I think so. I think what we do is model the process to a certain extent - the people come together and the balance of points of view produces a consensus. But what we’re modelling is not the peer review process. Our experts are not analyzing each other’s statements, picking them apart, revising them, and so forth. What I like is that it does communicate the idea that science works through many people coming together and not through individual “breakthroughs”.

One thing that’s important now is to focus on how to become a resource for journalists, because too often science journalism is just reporting the latest finding, not putting it in context of what has come before -- and we know that science is iterative, it builds. So I’m trying to figure out how we can make the site more appealing for journalists, so they can use it to inform their stories.

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Project #Femfacts co-financed by European Commission Directorate-General for Communications Networks, Content and Technology as part of the Pilot Project – Media Literacy For All

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