Kathlyn Stone, an associate editor, manages our health care news release review project. She tweets at @KatKStone
People who should know better are playing cat and mouse with health claims on Twitter. In the course of one week the University of Manchester used Twitter to promote two sensational health claims.
Last week evolutionary biologist Jonathan Eisen, PhD, UC-Davis, used a series of tweets to pounce on a University of Manchester promotional tweet relating to Alzheimer’s disease that he found “really disturbing.”
The original tweet claimed:
“A worldwide team of senior scientists and clinicians have come together to produce an editorial which indicates that certain microbes – a specific virus and two specific types of bacteria – are major causes of Alzheimer’s Disease.”
I asked Eisen to sum up what bugged him about the university’s tweet and how he thought it could have consequences for the news stream and public perceptions.
“The University of Manchester misrepresented the current state of knowledge about microbes and Alzheimer’s in a dangerous way,” says Eisen. “First, they did not accurately report on what was in a new editorial about Alzheimer’s and microbes. And then they added new, completely unsupported claims by one of their scientists regarding microbes supposedly being known to cause Alzheimer’s. Their misrepresentation of the state of the science is dangerous, unethical, and misleading.”
In the same week, the University of Manchester posted another sensational Tweet. This one claimed “ground-breaking results” from a breast cancer trial that made tumors “disappear” within 11 days.
“This has ground-breaking potential because it allows us to identify a group of patients who, within 11 days, have had their tumours disappear with anti-HER2 therapy alone and who potentially may not require subsequent chemotherapy. This offers the opportunity to tailor treatment for each individual woman. Professor Nigel Bundred, University of Manchester”
A story on that research published in The Telegraph – equally as staggering in its claim as the tweet – caught the attention of Alicia Staley, a breast cancer and lymphoma survivor, who linked to the story and tweeted breast cancer surgeon Deanna Attai, MD, asking: “Is this legit?”
The international criticism likely led to this statement from the lead authors urging strong caution about how the findings should be interpreted — tweeted by j.daniel Flaysakier, a French oncologist-journalist:
“We wish to emphasise that our research has shown this treatment to be suitable for a group of women with a particular type of breast cancer. We have no evidence that it would be effective for anything other than patients with newly-diagnosed, HER2 positive breast tumours. In addition, we do not yet know what effect the treatment will have on long-term survival.
“While we do not wish to downplay the significance of the findings, we also urge caution in their interpretation. Further trials will be needed before we can confirm these results, even in HER2 positive patients.”
The University of Manchester isn’t the only research institution taking to Twitter to flaunt questionable claims. Far from it. We can’t keep up with all of them while doing the bread-and butter-job of reviewing health news stories and releases. Fortunately, there are a growing number of eagle eyes looking for this stuff.
American Cancer Society director of medical communications David Sampson used Twitter to call out The Telegraph for using “astounding,” “cure,” and “breakthrough,” all in a story headline and sub-headline but neglecting to mention that the astounding study was on mice, not people. That story described research (also deemed “staggering” by The Telegraph) that took place at the Houston Methodist Research Institute while referencing the “astounding” UK research.
Attai, president of the American Society of Breast Surgeons, co-host of a long-running weekly Twitter chat on breast cancer issues (they use the hashtag #BCSM), and frequent HealthNewsReview.org contributor, has noticed a lot of misinformation going out on social media and she and other physicians, researchers and health journalists are flagging them, such as Eisen, Sampson and Flaysakier did, in an attempt to correct misleading statements.
“These press releases and media reports are very concerning — given the way that social media can quickly spread headlines and then move on to the next topic, corrections or clarifications don’t get as much attention, “ says Attai. “Really, the only safeguard (short of making these releases and stories stop) is to continue to educate the public how important it is to see beyond the hype and go to the original source.”
Staley, who is also a patient advocate and #BCSM chat co-founder, says on any given week about 1,000 people will share information and chat using the #BCSM hashtag. She said the Manchester breast cancer study “made a big splash very quickly” over social media and many from the #BCSM community reached out through direct messages asking for more information. Overall, she thinks people using social media for medical news “are much smarter now, and more skeptical than ever.” She adds:
“Too many times, the stories and breaking news that make a big splash seem to get refuted and tamped down over time. Patient advocates are very good at scanning and digesting news very quickly — and reaching out to their own personal contacts in the medical field to help determine the validity and viability of the information. When I see breaking news and stories that show major advances or miracle like “tumor melting” medicines, I know to reach out to Dr. Attai right away to check on it. I feel very comfortable sharing information — or debunking information — after I’ve checked in with Dr. Attai. I know that most patients won’t have the contacts and reach that I might have, so I feel a deep responsibility for my community to make sure that info that’s shared is accurate.”
As long as there are questionable health claims being distributed in the promotional cat-and-mouse game, there will need to be vigilant people who can hang a bell on the cat.