Way back in 1992, our founder, Gary Schwitzer, published an article in the Journal of the American Medical Association entitled, “The Magical Medical Media Tour.” In it, he concluded: “Failure to take time helps explain how we get familiar stories of quick fixes, magic bullets and daily breakthroughs that feed hysteria and hypochondria, thereby harming, not helping.”
After all this time, it is again time to reflect on how media messages can cause real harm to real people. It can occur when people believe and act on what they read or hear in imbalanced, inaccurate, incomplete and misleading news stories, advertising/marketing material, or any medium or media format. They may be misled into making bad decisions resulting in bad outcomes.
We want to help prevent avoidable harm by helping people avoid avoidable ignorance.
You have to search to find peoples’ stories of these harms. There isn’t any registry. As a result, people probably don’t realize that these media-induced harms occur and how devastating they can be. We want to provide a forum for these stories.
Have you been harmed?
We invite our readers to send us your stories about patient harm from misleading media. You can leave a comment after any blog post on the site, or send an email to firstname.lastname@example.org. Please provide as much information as you can, and, if you’re willing, provide a phone number in case we want to call you to get more background.
A news story’s role in the death of son of Mothers Against Medical Error founder
Helen Haskell states unequivocally that “media coverage played a large part in my son’s death.” Now she tries to help others after founding a patient safety advocacy organization that has many followers.
Cancer patient harms
An ad sells the idea that Cyramza, a drug for people with incurable cancers, will breathe new life into patients who are “determined to keep fighting.” The “fight” theme is common in media messages about cancer, and it can cause real harm to patients weighing difficult decisions about how to spend their remaining time.
A review of 22 cancer drug trials show that treatment harms are often described using vague euphemisms, like “manageable” or “acceptable” side effects. With subjective terms like these, it’s anyone’s guess what “acceptable” levels of nausea or “manageable fatigue” means. We take a look at why this matters and how journalists play a role.
The words we use to talk about cancer matter. Words like “survivor … warrior … bravery” and others, not only reveal our values and beliefs, but also have considerable impact. Our cancer vernacular can inform and inspire, but it can also misinform and lead to harm.
Headline whiplash: Are the clinical trial results for breast cancer drug taselisib ‘incredibly exciting’ or ‘disappointing’?
Patients reading the news headlines related to a 2018 clinical trial for a breast cancer drug would have a hard time finding out what’s really going on. Is it exciting news? Or is it disappointing? This confusion can be harmful to patients. “I feel like these studies are getting hyped up and then the results come out and so many are disappointing…now it feels like we’re back to the drawing board on research. It’s hard as the patient to feel any urgency around that,” explains stage four breast cancer patient Andrea Zinn.
Cancer misinformation in various media irks breast cancer patients in the US & UK
Brought together on social media by the research head of the Irish Cancer Society, three women with breast cancer share wide-ranging concerns about harmful, misleading information about cancer in the current mass media environment. They describe a spectrum from harmful scare-mongering at one end to harmful marketing hype at the other.
A breast cancer study in mice gets big headlines, setting up potential for patient ‘disaster,’ experts say
Some news organizations – most notably ABC’s Good Morning America – caused patient alarm and confusion when reporting on how cancer might spread after surgery – from a study done in mice.
Podcast: Real harm to real people from shoddy PR news releases
Hear the story of a man with glioblastoma (brain cancer) who was taken on a roller coaster ride of false hope – and harmed by misleading news (and news releases). It is the story of emotional harm for someone already facing a devastating cancer diagnosis. People who write news releases and news stories about health care should keep real people like this in mind before they hit “send” or “publish.”
Podcast: Making breast cancer decisions while conflicting news stories swirl about
A young journalist tells what it’s like to hear widespread news stories about people similar to you in age and in condition, but who promote treatment choices very different than what was recommended for you – all while in the midst of trying to make vital treatment choices yourself.
Podcast: ChemoBrainFog blogger criticizes celebrity breast cancer news
A woman shares her specific criticism of celebrities telling their own breast cancer diagnosis and treatment stories which may have no relevance in other women’s lives.
‘Simply cruel’: Patient advocates condemn breast cancer immunotherapy hype
Patient advocates describe the dangers of sensationalized reporting on clinical trials following misleading coverage of the drug atezolizumab, or Tecentriq, for triple-negative breast cancer.
Dubious stem cell treatments
Stem cell clinics are booming. And hurting people. People like George Gibson who went to such a clinic and lost more than $20,000 … he lost his eyesight. How can patients protect themselves in a marketplace where the Food & Drug Administration (FDA), Federal Trade Commission (FTC), and state medical boards have been ineffectual?
Women’s health magazine “journalism”
A woman with thyroid disease gives a glimpse of what it’s like to read a magazine piece that trivializes your condition with a light-hearted, whimsical, silly listicle. She called it insulting and a “shameful advertisement for Synthroid” which she says wreaked havoc on her life.
Medical devices patient harms
“Quicker recovery…smaller incisions…less bleeding…less pain.” Those are among the claims that local TV news stations repeatedly make when their local hospital pitches them a story about their prized investment in a robotic surgery system. The “news” resembles the ads and billboards that are part of hospitals’ marketing campaigns. But those claims don’t match the gruesome experiences that some women experience from robotic hysterectomy. We tell some of those stories. Others appear in “The Bleeding Edge,” a documentary on Netflix.
Podcast: ABC stations mislead patients with “migraine treatment” news
A migraine patient advocate tells how she saw the impact of misleading information on a major market television station’s newscast. She calls it deplorable to prey on people who are desperate for relief.
Experimental therapy patient harms
Patients with a rare stomach disorder express alarm as TV news promotes nerve freezing for weight loss
Dozens of people raised safety concerns on Facebook in the wake of unquestioning coverage of an unproven weight loss procedure that involves freezing the vagus nerve, which regulates hunger and digestion. Many said they have gastroparesis, a debilitating stomach paralysis that can be caused be damage to the vagus nerve. Said gastroparesis patient Tiffany Mielcarek of Ohio: “It’s not worth 25 pounds, let me just say that.”
Podcast: Rare disease foundation says medical journal misled patients
Hear from a woman who saw what could happen when even the title of a paper in a medical journal could confuse and mislead a desperate patient community. She said, “We don’t want to discourage patients about research but we were in a position to have to do that and to explain the limitations of what had been demonstrated vs. what had appeared to have been demonstrated. That was challenging.”
MS patient harms
MS patient shines a light on the harms of misleading media messages
As a columnist and blogger, retired journalist and MS patient Ed Tobias stays busy debunking misleading media messages. “These days, there are so many more treatments to provide a better quality of life than when I was diagnosed,” he explains. “But the misinformation that flows around the web — it means patients may be encouraged to have hope that may be a pipe dream.”
Harms from promotion of unnecessary medical tests
Podcast: The mild-mannered MD who became mad as hell
A physician-researcher became a health care consumer when she got a direct-mail promotion for cardiovascular screening. She wrote: “We must insist that our health care organizations do not respond to (economic) pressures by promoting dubious programs such as direct-to-consumer marketing of unnecessary and potentially harmful screening tests.”
Podcast: Emergency docs highlight toxic health care myths
Ideas such as “more care is better,” “faster care is better,” and “technology will save us” can establish unrealistic expectations and add to the stress of going to the hospital ER. Emergency physicians Greg Henry and Jerome Hoffman discuss how those myths translate into real patient harms, and what patients and doctors can do about it.
Why scary stories about sepsis could lead to some unintended harms
Some news stories and awareness campaigns highlight young, healthy people who are suddenly stricken with sepsis. Yet the condition is most common in the elderly, infants, and people with compromised immune systems. Such misleading portrayals could spread undue fear, exacerbating the problem of people being tested and treated for sepsis unnecessarily.
Hustling Hope: Montana couple sinks life savings into ‘miracle’ diabetes treatment
From San Diego news site inewsource.com: Trusting the online claims being made about Trina Health and its “artificial pancreas treatment” for diabetes, Ron and Julie Briggs signed up to run a clinic of their own in their hometown. It was the start of a long and painful journey that isn’t done unraveling.