My mother used to remind me, growing up, to ”believe half of what you see and none of what you read.” She wasn’t a conspiracy theorist, and even though I am more trusting than she would favor, I do think it’s very helpful to have a skeptical eye, particularly when reviewing content spreading online or highlighted in the mass media. Why? Because it’s very important to ask yourself two critical questions when assessing the quality of the information you’re getting:
1) What are the qualifications of the person relaying the information?
2) What are the motivations of the person/institution relaying the information?
In terms of qualifications, there is a lot of variability in the knowledge base of the people spreading information. Here on the GRACE website, we try to offer the distinction that the people writing from a faculty perspective are writing from a vantage point of a significant amount of background knowledge and no conflict of interest — or an expectation that any conflict of interest will be stated. Mass media stories about health care are sometimes written by reporters or columnists who are physicians or scientists or journalists dedicated to health and science, but very often the person relaying the TV news story or writing the article in the local town paper struggled to get a C+ in high school science and pursued a journalism degree with no science training after that. In the world of discussion boards, Facebook, and Twitter, anyone can perpetuate the story. Sometimes that’s a very knowledgeable patient or caregiver, sometimes it’s a doctor in the field, but sometimes it’s someone who doesn’t think critically at all about the quality of the information.
KEY POINT: Be mindful of the quality of your source. Don’t be as confident about what is being highlighted by someone who isn’t knowledgeable about the subject. That TV news correspondent may just be a good looking talking head who is as dumb as a bag of rocks.
Turning to the motivations of the person or institution conveying the information, remember that while some people are participating in the conversation are just trying to improve outcomes for cancer patients as their only goal, others have their own motivations. The people on the news want to generate interest among viewers and know that a heavily hyped story suggesting a breakthrough in cancer treatment is going to be a far bigger draw than a sobering report of a trial that failed to show a benefit. For that matter, it’s better for ratings to offer a tantalizing suggestion of a new miracle than to note that the work being done is very preliminary and not likely to lead to widespread use in cancer patients unless/until many larger confirmatory studies are conducted and show similarly good results.
A recent post on the KevinMD website by Dr. Deep Ramachandran also highlights a practice that merits discussion — press releases by academic institutions highlighting work being done there, but being used as free marketing. He notes that these stories are often about work of not especially great quality but are often picked up by uncritical consumers who perpetuate them in social media, giving them far more credence than they deserve. These are often just small studies that aren’t changing the field, or an excuse to discuss a new radiation machine that was bought. But the people putting out these press releases are hoping that they can generate buzz by capitalizing on the gullibility of people who can’t distinguish between meaningful content and fluff. Alternatively, the people writing the press releases are just themselves completely ignorant about the quality of the work because they aren’t qualified to write about science. Articulating what I have long been meaning to say, Dr. Ramachandran notes that from a review of press releases reviewed in a study published in the Annals of Internal Medicine,
In less than half the releases was there any sort of caveat that the results may be over-hyped, or that the results were preliminary, or that they might be wrong, or that further study in the area was needed, or that the authors might be morons.
I have said before that seeking quotes about the importance of research by asking the lead investigators what they think is like asking a parent if they think their child has a promising future: I don’t think there’s anyone more biased and less balanced in their ability to provide a judgment, yet that’s what journalists habitually do. The closest second for most biased would be the PR team at the institution where the research was conducted, which is paid to generate buzz.
By the way, the biggest overhype that I think I’ve ever seen in cancer in the last 5 years has been on dichloroacetate (DCA), which was a frenzied media hullaballoo orchestrated by the investigators and the institution where some very preliminary work suggested DCA might be effective against cancer, based on cell lines and animal models — which are notoriously poorly correlated with activity in actual cancer patients. The invstigators and institution raised funds, the media went crazy, patients all over the internet traveled and spent (and still spend) lots of money getting DCA from places seeing an opportunity…and now, more than five years later, there is a conspicuous lack of evidence that anything more than the rarest patient is actually doing well on DCA (and don’t forget that even a broken clock is right twice a day — a rare patient will do well on just about anything). After more than five years of patients desperately taking DCA and still not seeing this promise realized, it’s hard for me to escape the conclusion that the story isn’t going to live up to the hype, though I’m not sure anything could.
KEY POINT: Think carefully about the origin of the story and the motivations of the people generating and perpetuating it. Don’t indulge the people hoping to manipulate suckers into generating buzz based on dubious work. And if the experts sound like wet blankets, that’s just us trying to inject the voice of reason into a din of hype.
Of course, there’s great information online, but the key is being an informed consumer of health care information. Know the quality of your source, and know their motivations.