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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.

Snake oil! By tellumo via FlickrGoldberg 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.

st jacobs oil by Tim & Selena Middleton via FlickrHow 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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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Richmond, Va., with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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