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“Fake News” Can Be Hazardous to Your Health

In a recent post, I talked about the trust that’s required for effective peer health discussions. That trust issue is even more critical when it comes to the science of medicine, and its inclusion in those peer health discussions – as in, is what’s being shared in peer health groups scientifically sound, or snake oil?

One of the downsides of giving everyone a voice – one of the foundational goals of the web, according to Tim Berners-Lee, its creator, “its true potential would only be unleashed if anyone, anywhere could use it without paying a fee or having to ask for permission”- is that everyone has an opinion and a place to express it, but opinions are not facts.

Which brings me to today’s web, where anyone with a smartphone can share an opinion, call it a fact, and gather a community around that opinion-in-fact-clothing. There is dangerous “fake news” mushrooming across the globe, thanks to the web, with the most egregious versions of it driving bad decisions about human health. One example of that is what’s called the anti-vaxx movement, where a debunked article by a disgraced scientist named Andrew Wakefield has continued to drive a mistaken belief that the measles-mumps-rubella (MMR) vaccine given to children under two years old causes autism. (Spoiler: it does not.)

That’s only one example. There are a host of others, including bogus cancer cures that proliferate on Facebook and YouTube, and recommendations that drinking bleach can cure autism. So what’s a patient community member to do? And where’s the clinician community on this issue?

In a powerful op-ed in the New York Times in December of last year, “Dr. Google Is a Liar,”cardiologist Dr. Haider Warraich said that Silicon Valley needs to own their part of this problem, that journalists need to do a better job of covering health and science news, and that the scientific community itself needs to be more transparent and easy to understand when they talk about new discoveries.

It turns out that the cardiology team is playing hard on the side of truth here, publishing an editorial in February 2019 in more than two dozen cardiology-related scientific journals around the world, saying that the medical community needs to help the public vet the message they’re getting from whatever sources they use for health information. The American Heart Association even has a short and snappy video – it qualifies as a thirty second ad that could run on television – “5 tips for finding trustworthy health information online” that recommends: Top of FormBottom of Form

  1. Look for government sites, medical professional societies, and reputable medical schools as information sources
  2. Look for sites that stay current, that refer to updated information and current science
  3. Make sure the information on the site is reviewed by a medical professional
  4. Beware of sites that promote “miracle cures” (and that run ads for those “miracles”)
  5. Verify what you read with your clinical care team

The clinician community has joined the fight against fake news in medical science. The patient community needs to make the same commitment to fighting junk science in our circles. What should be on our list of recommendations for avoiding falling for “fake news”? And should we develop a code of ethics for patient community leaders that covers the information we share online?

I welcome all suggestions, and I’ll include them in a future post. Just hit me up on Twitter, using the hashtag #PtLeaderEthics, or via email. Let’s fight fake science news together, shall we?

Notable News

Knowledge is power, but staying on top of and researching all the latest headlines can be a time-consuming and daunting process. That’s why we’re doing it for you. That’s right. We’ll keep an eye on the most interesting and newsworthy developments of the past month or so and then we’ll summarize them for you here. We’ll even provide you with links to the more detailed articles at the end of each summary. The best part? We’re starting right now.

There’s a lot of buzz about immunotherapy and rightly so. This month an article on time.com featured a successful immunotherapy test trial in which a young leukemia patient’s own immune cells were used to fight her cancer. The genetically modified immune cells are called chimeric antigen receptor (CAR) T cells and with one application they can be used to train the body to fight the cancer cells, hopefully, indefinitely. The modified cells are basically drugs living inside the body. That means patients won’t need to take regular doses of medications or be subject to other, sometimes unpleasant, treatments. There is a huge push for the Food and Drug Administration to move the therapy beyond the testing phase so more people can benefit. So far, the results are promising. Two men underwent the CAR T therapy in 2010 and both remain in remission today. Researchers are proceeding with caution though. The CAR T cells are individualized, therefore very expensive, and so far the process only works on some types of blood cancers There are also some pretty intense side effects. When the modified cells enter the body and start killing off the cancer cells the immune system response is acute and can include things like high fever, difficulty breathing, and kidney failure. All told, the latest developments in immunotherapy are worth keeping an eye on. Read more here. You can also learn more about it here. And even more, including a bit about the history of the research and the men behind the research here.

An unexpected hurdle has emerged in cancer research: not enough patients. Hard to believe, but as reported by nytimes.com earlier this month, there are more drugs and clinical trials than there are patients to test them on. Here’s why. Inspired by the latest developments in the aforementioned immunotherapy, companies are in overdrive and have created a surge in trials for new drugs that use the body’s own immune system to combat cancer. These drugs have the potential to yield a huge profit should the FDA give the stamp of approval. None of the companies want to be left out of the earnings so they are all trying to develop their own version of drugs that treat similar cancers. That alone is enough to spread thin the eligible patients. Factor in the specificity of some of the trials and the patient pool decreases even more. In addition, the rapid increase in trials have made some of the major medical facilities wary and they have dialed back their participation. You can find more details here.

A routine blood test may soon be the best method of early detection. Researchers in Japan have developed a method that uses a single drop of blood to test for 13 cancers. The test is relatively inexpensive, would be done as part of a comprehensive medical exam, and use a molecular substance called MicroRNA to detect the cancers in early stages. Clinical trials are underway as of earlier this month. This promising development was reported at pressherald.com and more details can be found here.

Stay tuned. In the months to come, we’ll help keep you informed which will help keep you empowered.