Friday, February 25, 2011
How the Internet hijacks medical science
In his new book, "Tabloid Medicine: How The Internet Is Being Used to Hijack Medical Science for Fear and Profit," Robert Goldberg, PhD, explains why the Internet is a double-edged sword when it comes to health information. On the one hand, the Web can empower people with quality medical information that can help them make informed decisions. On the other hand, the Web is an unfiltered breeding ground for urban legends, fear-mongering and snake oil salesmen.
Goldberg uses case studies to expose the sinister side of health misinformation. Perhaps the most compelling example of a medical "manufactroversy" (defined as a manufactured controversy that is motivated by profit or extreme ideology to intentionally create public confusion about an issue that is not in dispute) is the anti-vaccine movement. Thanks to the efforts of corrupt scientists, personal injury lawyers, self-proclaimed medical experts, and Hollywood starlets, a false link between vaccines and autism has been promoted on a global scale via the Internet. The resulting panic, legal feeding frenzy, money-making alternative medicine sales, and reduction in childhood vaccination rates (causing countless preventable deaths), are sickening and tragic.
As Goldberg continues to explore the hyperbole behind specific "health threats," a fascinating pattern emerges. Behind the most powerful manufactroversies lies a predictable formula: First, a new problem is generated by redefining terminology. For example, an autism "epidemic" suddenly exists when a wide range of childhood mental health diagnoses are all reclassified as part of an autism spectrum. The reclassification creates the appearance of a surge in autism cases, and that sets the stage for cause-seeking.
Second, "instant experts" immediately proclaim that they have special insight into the cause. They enjoy the authority and attention that their unique "expertise" brings them and begin to position themselves as a "little guy" crusader against injustice. They also are likely to spin conspiracy theories about government cover-ups or pharmaceutical malfeasance to make their case more appealing to the media. In many cases the experts have a financial incentive in promoting their point of view (they sell treatments or promote their books, for example).
Third, because mainstream media craves David and Goliath stories and always wants to be the first to break news, they often report the information without thorough fact-checking. This results in the phenomenon of "Tabloid Medicine."
Fourth, once the news has been reported by a mainstream media outlet, the general population assumes it's credible, and a groundswell of fear drives online conversation on blogs, websites, and social media platforms.
And finally, celebrities take up the cause while personal injury lawyers feast on frightened consumers who now believe that they are victims of harm perpetrated on them by the "medical industrial complex." Meanwhile flustered government health officials have no scientific evidence of harm, but cannot prove a lack of association without further research (and that takes time). So they offer what seems like tepid reassurances, which are perceived by some to be tantamount to an admission of guilt.
And that's how a lie becomes an urban legend. Perception is nine-tenths of reality.
How is it that we fall for manufactroversies again and again? Goldberg argues that the answer may be found in our own psyches: "People aren't programmed to respond to [science]; we are made to be moved by the individual and the identifiable and to generalize from the single to the many." (p. 177)
In other words, good science doesn't make good television. We are suckers for an emotional story, we aren't good at understanding relative risks, and we will always be more scared of sharks than automobiles, even though the latter kill exponentially higher numbers of us.
Beyond the fact that we are internally programmed to listen more closely to hysteria than reality, Goldberg suggests that there's another barrier to medical progress. And that is our fundamental belief that medicines should present us with zero risk. As a culture we have developed a risk aversion to treatment options that is so strong that we expect the FDA to discontinue a drug at the first whiff of a concern, real or perceived. We have adopted the Precautionary Principle: "The Precautionary Principle does not merely ask us to hypothesize about and try to predict outcomes of particular actions, whether these outcomes are positive or negative. Rather, it demands that we take regulatory action on the basis of possible 'unmanageable' risks, even after tests have been conducted that find no evidence of harm. We are asked to make decisions to curb actions, not on the basis of what we know, but on the basis of what we do not know." (p. 40)
And thanks to the Internet's ability to decrease the signal to noise ratio, perceived harms of various medications can result in full blown manufactroversies with lightening speed. Goldberg cites several cases where life-saving drugs have been withdrawn from the market because of a negligible risk in a small sub-population of patients, leaving those who would benefit to search for the drug overseas or to simply suffer without treatment. In other cases, tiny risks are blown out of proportion, so that the benefits that outweigh them are ignored at patients' peril.
In this new Internet era, Goldberg suggests that Americans need to develop more highly developed critical thinking skills, so that they can detect the difference between a true health benefit (or threat) and an exaggerated one (promoted by "Tabloid Medicine"). There has never been a greater need for physician and scientist "voices of reason" to speak out via online media to provide guidance to a public assailed daily by claims of "miracle cures" and "deadly environmental hazards."
In the end, Goldberg argues that personalized medicine, and a search for biomarkers that can predict patient response before they begin a medical treatment, may be the best way to reduce the risk of harm and maximize health benefits. His theory is that if drug side effects can be reduced to near zero, there won't be as much hysteria and misinformation online about them.
As for me, I know that I still think about sharks when I go to the beach. I can't help it. It's hard-wired. However, I also have an inner dialogue about how irrational I'm being, and how I'm more likely to be hit by lightning than eaten by a great white. I think that if we can help people (including the mainstream media) to add that second sanity narrative back into our health conversations, we'll have more true patient empowerment.
In my opinion, personalized medicine is part of the solution, but it doesn't solve the deeper issue within each of us, that we will always be drawn to exaggerated claims and "sexy" news headlines. Healthy skepticism comes with education and self-awareness, the pursuit of both is what makes a true Scientific American.
Related books I also recommend:
Snake Oil Science: The Truth About Complementary And Alternative Medicine Barker Bausell takes a look at how we draw false conclusions from scientific studies and how snake oil salesmen justify what they do.
Deadly Choices: How the Anti-Vaccine Movement Threatens Us All Paul Offit delves deeply into the greatest manufactroversy of recent times.
Bad Science: Quacks, Hacks, and Big Pharma Flacks Ben Goldacre describes some modern day snake oil salesmen in Britain, and how they pull off their lies.
This post by Val Jones, MD, appeared at Get Better Health, a network of popular health bloggers brought together by Val Jones, MD. Better Health's mission is to support and promote health care professional bloggers, provide insightful and trustworthy health commentary, and help to inform health policy makers about the provider point of view on health care reform, science, research and patient care.
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