(Mis)Communicating Health Science – UPDATED!

I’ve been living the online life for a long time, since the BBS, pre-internet days. Even then, being an MD, friends asked me to opine on stuff that was being relayed through our modems, or I would come across something so egregious that I couldn’t keep quiet (e.g. the infamous “aspartame letter” that has been doing its rounds for over 20 years now).

Lots of fact-free “health advice” float around on the internet, ranging from the mildly humorous to the outragingly dangerous, such as bleach-based oral and intra-rectal therapies (yes, that is a thing) or the anti-vaccine activism that I comment so often.

Frequently among those are miracle cancer cures or diets, and a few sad stories related to that have been making the rounds.

First, there was the case of the woman who miraculously got “cured” from brain cancer and made a career out of that — it turned out that the whole thing was a fabrication, I dare anyone to read and not get infuriated:
‘Wellness Guru’ Belle Gibson lied about having brain cancer, profited from lying about bogus cancer cures. As the author of that article, Xeni Jardin, puts it, she is certainly guilty, but far from being the only one:
So yeah. Fuck Belle Gibson.
But fuck the culture of magical thinking and hero idolization that built her myth into a profitable business, ignoring decades of real science, and placing vulnerable people with cancer at real risk of death.
Fuck everyone who enabled her, and profited along with her, knowing she was lying. Fuck everyone who forwarded her dumb bullshit lying articles around to people like me who actually did have cancer.
And fuck cancer.

Needless to say, I fully agree…

Furthermore, two examples of how bogus advice can put people in risk surfaced around the same time. In one case, a study found out that excessive intake of dietary supplements can increase the risk of certain types of cancer. And similar risks are involved in fad diets as well.

The amount of information available on the internet is astounding, but much of it is incorrect, and without an adequate background it is very difficult to sift through the tsunami of data that accompanies any web search. But certainly it is made much more difficult by people who actually should know better, reporters and above all professionals and scientists themselves.

The problem with the press was illustrated recently by a hoax pulled by a journalist/scientist who reported it in a blog: I Fooled Millions Into Thinking Chocolate Helps Weight Loss. Here’s How. This was almost immediately echoed in important blogs, like BoingBoing and Pharyngula. He created a shoddy study, massaged the data, created an important-named ghost institution to attribute the study, published it in a shady pay-to-publish journal and hyped it for the press. The result, despite many signs of tomfoolery, was that journalists swallowed the story hook, line and sink (not to mention chocolate, the bait). As he reports, “We landed big fish before we even knew they were biting. Bild rushed their story out—’Those who eat chocolate stay slim!’—without contacting me at all. Soon we were in the Daily Star, the Irish Examiner, Cosmopolitan’s German website, the Times of India, both the German and Indian site of the Huffington Post, and even television news in Texas and an Australian morning talk show.

His takeout lesson? “The only problem with the diet science beat is that it’s science. You have to know how to read a scientific paper—and actually bother to do it. For far too long, the people who cover this beat have treated it like gossip, echoing whatever they find in press releases. Hopefully our little experiment will make reporters and readers alike more skeptical.

UPDATE [May 31st 2015] PZ Myers has reconsidered his position on this hoax: Chocolate ethics. He writes: “When I put it in those terms, whether this was a study I could have participated in in good conscience, it suddenly makes it extremely problematic to present it to students, no matter how illuminating the results are. Science is all about the process, not the answer, and corrupting the process further, even to demonstrate the existence of extant corruption, is a violation. I tell students over and over that getting a pre-determined answer in lab isn’t the point — it’s how you get that answer that matters most. It’s a tough lesson to teach. I’m always getting distressed students who think they’re going to fail a course because their experiment didn’t work, and I have to tell them I don’t care that it didn’t work — do you understand why it failed? Do you have ideas for how to correct the problems? Did you learn something? Are you willing to accurately report what went wrong? That’s what I care about.

As someone who is highly critical of what became known as the “Sokal Hoax”, and for similar reasons, I can relate to the critique, and the more I think about it the more I agree. That, however, doesn’t change my opinion, based on facts, that journalism in general, and scientific journalism in particular, have long lost its credibility, unfortunately, with the usual exceptions shining bright against a background of mediocre “churnalism”.

Although I hope he’s right, I’m not that enthusiastic about it. First of all, although the media in general certainly is guilty as charged, scientists themselves are far from being blameless. As commented in a blog post at the London School of Economics blog, scientists and research institutions have come to rely on PR agencies to hype their own research, being at least as culpable for the distorted versions of science that are presented to the general public. As the author of that post, Alasdair Taylor, puts it: “It seems rather than highlighting the complexities, messiness and uncertainties in science to the media, the science PR machine has resulted in a sanitised, overly positive presentation of research findings. (…) Even more worrying were indications that science PR campaigns stifled internal debate as scientists become worried about presenting findings that might undermine the overall argument.

Similar concerns are voiced in an online article, This is why you shouldn’t believe that exciting new medical study. Taking into account the work of Naomi Oreskes, who has written about the deliberate distortion of science, and John Ioannidis, who has written extensively about the limitations of isolated studies, Julia Belluz signals the necessary caution that should be taken when reporting – and reading – health science news; as she points out, the available accumulated knowledge is usually more reliable than the latest brand new thing. As she concludes her article: “For my part, I’ve tried to report new studies in context, and use systematic reviews — meta-analyses of all the best studies on clinical questions — wherever possible. When scientists or other members of the media prematurely blow up a novel breakthrough, I’ve tried to convey the reality that it’s probably not a breakthrough at all. (…) As we turn away from the magic pills and miracle treatments, I think we’ll focus more on the things that actually matter to health — like education, equality, the environment. It’s not always easy, and the forces pushing us to the cutting edge are powerful. But I try to proceed cautiously, to remind myself that most of what I’m seeing today is hopelessly flawed, that there’s value in looking back.

Scientists and journalists have the duty to adequately inform the public for many reasons, including safeguarding people’s health. A dramatic tale of two parents who lost precious time and subjected their sons to arguable “treatments” to “cure” autism illustrates both the irresponsibility of health professionals who should know better and the huge effort and cost they had to make to get of that spiral by themselves: An Alternative-Medicine Believer’s Journey Back to Science. As written in the conclusion of the article, “Although the previous regimen of supplements and dietary changes wasn’t physically harmful, it still exacted a heavy toll in financial and mental resources. Had they continued to pursue it, Jim believes, there would have been no time, no money, and no willingness to think long-term. And eventually, their son would be an adult, and they wouldn’t have known what to do. But now there is a plan, and they rest easier knowing that Ben will never have to live in a state-run home or move in with his brother. For the Laidlers, the real alternative was to stop believing in miracles—and start planning for the future.

To end this in a more humorous note, I’ll get back to where I began this. Recently I jokingly made an online comment about the insanity of coffee enemas as another “miracle cure” fad (yes, this is a thing). I got a response from a person who pointed to a text, by a self described “science-based pharmacist” who was actually supportive of that silliness. I was getting ready to comment on the multiple fallacies and incorrections in that piece, at the same time finding it strange that it was published in a respectable science blog. But I just had to keep reading it, and I found out the reason for that; the post was actually a critique of that crappy piece, which presented it first and then thoroughly dismantled it, concluding that “Practices like coffee enemas have no plausible benefit and a real risk of harm. More broadly, and perhaps most importantly, the continued promotion of these practices distracts from science-based advice that can support better health decision-making.” (Ask the (Science-Based) Pharmacist: What are the benefits of coffee enemas?). The person who sent me the link clearly had not bothered to read the whole thing…

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