Unexpected Channels of Patient Misinformation

by Vadim Shteyler

As a medical student on the wards, physicians often recounted stories of horrifying acts of paternalism from the days of their training. Though paternalism is far from abolished, the progress we have made as a profession has become a source of some pride. On the wards, autonomy has become exalted as a sacred right and invoking paternalism can end most debates. Though autonomy is a complicated and frequently debated concept, most agree that the cultural shift is a step in the right direction. And though perhaps we should be proud of our steps towards protecting the way patients receive information in clinic, we should be more aware of other sources of patient information as well.

Of course, it may not come as a surprise that a lot of the medical information available to patients is less than accurate. With the Internet, ubiquitous misinformation about anything should be expected. However, when we think about the sources of that misinformation we often think about random websites found during quick Google searches, Wikipedia, sensationalized media coverage, and pharmaceutical advertisements (the later will be discussed further below). A few recent studies are bringing attention to more surprising culprits: Hospitals and Academic Institutions.

If patients expect unbiased information from individual providers, they may reasonably expect it from hospitals as well. A research letter published last month in JAMA Internal Medicine, however, showed that, for at least the case of Transcatheter Aortic Valve Replacements (TAVR), information on hospital websites was not balanced. The authors reviewed the websites of every U.S. hospital that offers the procedure and found that while 99.2% listed at least 1 benefit of TAVR (over open aortic valve replacement), only 26.3% listed at least 1 risk. Further, while 37% of websites quantified a benefit, only 4.6% quantified a risk. As more procedures mean financial gain for hospitals, there is a fear that online hospital advertisements may be disguised as balanced sources of medical information. Unlike prescription drug marketing, which is monitored by the FDA, hospital advertisements are subject to the same Federal Trade Commission (FTC) regulations as those for any other products. Legally, they are not required to provide balanced information on risks and drawbacks.

While media coverage has been shown to be influential on both health providers’ and patients’ behaviors, it has also been blamed for sensationalized coverage of health advances. A recent study in the BMJ shows evidence that a significant fraction of exaggerated health news may be attributable to exaggerated press releases by Academic Institutions. While many people believe science is a path towards discovering truth, few might suspect research institutions of misrepresenting scientific findings. The paper first described three types of exaggerations in health news coverage: giving explicit advice, turning correlations into causal claims, and making inferences to humans from animal research. If an Academic Institution put out an exaggerated press release (compared to the wording of the primary research paper), then the media was 6.5, 20, and 56 times more likely to reflect those three exaggerations, respectively. Similar to the provider-hospital dynamic, researchers might aim to perform well-controlled experiments to produce good quality data while their institutions might be distorting public perceptions of their results for recognition.

The most notorious, and popularly criticized, agents of patient misinformation, however, have probably been pharmaceutical companies. While a lot of recent media coverage spotlighted their efforts to influence individual providers’ prescription practices (see this hilarious installment of John Oliver’s Last Week Tonight), pharmaceutical companies impact patient information in many ways. The pharmaceutical industry is currently the biggest defrauder of the federal government under the False Claims Act, paying nearly $15 billion in penalties between 2006 and 2010 alone. The largest few companies have been the most frequent offenders and have continued repeating violations despite paying the largest (and increasing) penalties. A study examining pharmaceutical marketing in the U.K. and Sweden, published in PLOS Medicine this week, found that rulings on marketing regulation violation occurred more than once weekly. Like in the U.S., most violations were committed by a few repeat offenders. And the penalties in Sweden and the U.K. constituted about 0.014% and 0.0051% of annual sales revenues, respectively. Another study in PLOS Medicine, analyzing companies’ alleged off-label marketing strategies, found that 44% directly targeted consumers. This included paying non-profits or consumer-focused disease management organizations to support off-label uses (see Westlock v. Pfizer) and marketing on-line as a “non-commercial public interest organization” (see Lang and Rushin v. Allegran). Allegedly, some companies have even given patients gifts to seek prescriptions for off-label uses (see Garcia and Driscoll v. Serono).

Corporate interests shaping the landscape of patient education may profoundly impact quality of care. One randomized control trial showed that standardized patients who ask for a brand-specific prescription are more likely to receive it. When it comes to protecting a patient’s right to informed decision-making, it is becoming increasingly clear that the scope of our efforts need to widen beyond the clinic.

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