Health science gets a lot of attention in the popular press. People love hearing about breakthroughs, paradigms shifts and emerging cures. The problem is, these stories are almost always wrong.
While optimistic miscalculations of the state of biomedical research may seem like a harmless distraction, there is a growing body of evidence that suggests it can be the source of real social harm. It can drive unrealistic expectations, impact the public use of health care resources and even shape a less-than-ideal research agenda. It can also help legitimize the marketing of unproven therapies.
This week, the New England Journal of Medicine (NEJM) reported on three people who went blind after receiving an unproven stem cell treatment at a Florida clinic. The patients paid thousand of dollars for what they thought was a clinical trial on the use of stem cells to treat macular degeneration.
The primary fault, both legally and morally, for the marketing and use of unproven stem cell therapies lies with the providers who are involved with the practice. We need national regulators (such as Health Canada and the FDA) and the bodies that oversee the relevant healthcare professionals (such as the colleges that regulate physicians) to take a more active role in fighting this – a point noted by George Daley in an essay accompanying the NEJM case report.
Indeed, it is hard to blame patients for being drawn to providers that present optimistic portrayals of benefit. We live in confusing times. It is becoming increasingly difficult to tease out the real science from the bad and the “fake health news” from genuinely exciting scientific advances. Not only is the science twisted by innumerable systemic forces – publication pressures, overly enthusiastic press releases, commercial interests and media spin – but misinformation is being broadcast on a growing number of communication platforms. Social media, for example, has allowed for the rapid dissemination of false promises and the creation of confirmation bubbles where like-minded believers can trade anecdotes of success. And studies have shown that clinics exploit platforms like Twitter to create buzz about, and demand for, unproven therapies.
For the general public, here is a good rule of thumb: doubt absolutely every single claim that suggests a significant breakthrough. Doubt everything. This may sound a tad cynical, but if you adopt this approach you will be pleasantly surprised when something actually pans out. More important, this nothing-ever-works-as-promised strategy will be correct 99 percent of the time.
For patients seeking a treatment, be cautious of any clinic offering a therapy that seems too good to be true, because 99.9 percent of the time it will be too good to be true.
Consider stem cell research. Think of all the hype, the headlines about near-future applications, and the pronouncement about revolutionary regenerative therapies. This hand waving has been going on for almost two decades. So much so that the phrase “stem cells” has morphed into cultural marker for “cutting edge.” But despite all this unrelenting, upbeat noise, there are very few stem cell therapies that are ready for clinical application. George Daley, who is a renowned stem cell researcher and the current dean of Harvard Medical School, concludes that there are just a handful: those used for blood related ailments and for skin (epithelium) conditions. The International Society for Stem Cell Research agrees with George and notes that “the list of diseases for which stem cell treatments have been shown to be beneficial is still very short.”
Don’t get me wrong: I believe stem cell research remains a fantastically promising area of science. But true medical breakthroughs are rare. Incredibly rare. In fact, if a study claims a large effect size, which is often the case in stories about breakthroughs, there is a good chance the results will be overturned by subsequent work. In a well-known 2003 analysis, it was found that out of 101 studies published between 1979 and 1983 in top science journals and framed as clinically promising interventions, only one remains in common use today (yep, about 99 percent of the peer-reviewed predictions were wrong). The authors concluded that “even the most promising findings of basic research take a long time to translate into clinical experimentation, and adoption in clinical practice is rare.”
Yes, we need regulators to crack down on the marketing of unproven stem cell therapies. As demonstrated by these recent reports of treatment-induced blindness, these clinics can cause serious harm. But we also need to do our best to curb the science noise that helps legitimize the false claims made by the purveyors of stem cell products. Scientists, clinicians, policymakers and journalists should do their best to counter misinformation in all its forms.
We need more good science, and less science-y noise.