Rumor control: How to battle online misinformation

E-mails touting false health claims are common, and it can be hard to debunk them to worried patients. One doctor decided the best way to fight a viral e-mail was by creating his own.

By John McCormack, amednews correspondent — Posted March 17, 2008

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For many years, several patients each week have come to William H. Parker, MD, to request a CA-125 blood test, or to inquire about scheduling a hysterectomy based on the results of a prior CA-125.

When this happens, Dr. Parker takes a deep breath -- then reels off a lengthy explanation of the test's shortcomings as a screening tool for ovarian cancer. He tells them that the test, which produces an inordinate number of false-positives, should not be used to make important surgical and treatment-related decisions.

But despite the fact that Dr. Parker is a clinical professor at the David Geffen School of Medicine at the University of California at Los Angeles, chair of the Dept. of Obstetrics and Gynecology at Saint John's Health Center in Santa Monica, Calif., an adviser to a number of scholarly journals, and the author of A Gynecologist's Second Opinion: The Questions and Answers You Need to Take Charge of Your Health, he still has to pull out all the stops to get his patients to agree.

Why does it take a Clarence Darrow-like argument to get patients to buy into Dr. Parker's position?

These women wholeheartedly believe in the CA-125 test to screen for ovarian cancer because they read about it in an e-mail, one that has been circulating since 1998. The woman who wrote it -- Carolyn Benivegna of Novi, Mich. -- sent out a revised version two years later, which explained that although the test was right for her, it might not work for everyone, and should be only one part of a diagnostic regimen.

But her revised e-mail is not the one still making the rounds.

"To explain to them why this test is not reliable, without brushing their concerns off, I have to launch into a 15-minute discussion about the science and why this e-mail presents the wrong information. And I still have to quell their anxiety about it," Dr. Parker says.

This scenario illustrates how online information -- specifically those much-circulated e-mail "warnings" -- can influence health beliefs in the general population.

Dr. Parker decided he had dealt with misinformed patients too long. He resolved to try to defuse this e-mail rumor that had grown from a simple post by a concerned woman, relying on her personal experience, to a full-blown viral message with seemingly unstoppable momentum. He found a strategy that could work for other physicians tired of answering questions about e-mail-fueled myths.

Stamping out misinformation

"The e-mail with all this misinformation in it had become very bothersome to me over the years. So one day I thought to myself, 'I need to do what they did. I need to get an e-mail out there that will take on a life of its own and be passed from woman to woman,' " he says.

To ensure his e-mail message would influence a large number of people and thereby combat the false messages in the original e-mail, he knew he would have to launch his own viral e-mail campaign, a "marketing" effort that depends on a high pass-along rate from person to person. To succeed, his efforts would need to accomplish several objectives.

Give the e-mail legs. Having experience with computers and online communications, he understood that to get the e-mail before a substantial number of people, he would have to do more than send it to his own list of friends, acquaintances and business associates.

As a board member of the National Uterine Fibroids Foundation, a nonprofit organization based in Colorado Springs, Colo., he wondered whether he could post an anti-misinformation e-mail to the foundation's online support group. The group's 6,000 members might then pass the e-mail on.

When he approached the foundation's executive director, Carla Dionne, she was all ears.

"Bill said he was so sick of having to spend all this time with patients correcting this misinformation," Dionne says. "I told him that we have one of the largest online women's health care groups out there, and probably one of the most active. So I thought this would be an excellent place for him to get his message out."

Leveraging the foundation's relationship with its members was key to introducing this e-mail, says Jeanne Jennings, an e-mail marketing consultant in Washington, D.C.

"Getting the initial e-mail to a large group of people is always the biggest challenge in starting a viral e-mail campaign. So going to this key group that already had an electronic relationship with a large group of concerned women was definitely the right first move," Jennings says.

Give the e-mail some punch. With the foundation on board, the next challenge was to write the message. Dr. Parker ran his first draft by Dionne.

"He shared with me his e-mail, and it needed a lot of work. It was extremely passive and written from the clinician's perspective. It was calm, educated and careful. The whole business of catching attention seemed somewhat offensive to him to some extent. I thought, 'No one will read this. They will read the first sentence and then just delete it,' " Dionne says.

She advised him to review the original CA-125 e-mail with an eye toward discerning why it resonates with so many women.

Dr. Parker came back with text that was similar in style: emotionally charged and written in the active voice. He also put the most important information near the top.

"The content of the message has to be of intense interest to your target audience. Women, of course, are naturally looking out for each other. So if there's a health concern or a danger, they will naturally pass it on to their network of friends and relatives," Jennings says.

Give the e-mail credibility. Many people will circulate an e-mail without bothering to check its source. But Dr. Parker wanted even the most discerning readers to find his message credible. He also wanted to catch the attention of recipients by including some recognizable names.

To add such panache, he solicited endorsements from two nationally prominent physicians: Beth Karlan, MD, director of the Women's Cancer Research Institute, the Division of Gynecological Oncology and the Gilda Radner Hereditary Cancer Detection Program at Cedars-Sinai Medical Center in Los Angeles; and Jonathan S. Berek, MD, professor and chair of the Dept. of Obstetrics and Gynecology at Stanford University School of Medicine and Chief of Obstetrics and Gynecology at Stanford University Hospital and Clinics.

Is it working?

Although Dr. Parker does not have a method in place to determine whether he is reaching his intended audience, early signs indicate his e-mail is having an impact.

A few weeks after it was released in January, he encountered a patient who mentioned she had received his e-mail about the CA-125 test.

"So it is already out there and it is getting around," Dr. Parker says.

His e-mail was written up on the New York Times Web site in January. It also has appeared on a Web site (link) that monitors and debunks Internet chain letters, and which since 2002 has had a warning about the original e-mail.

"I've put copies of the [most recent] e-mail and the New York Times article in the waiting room. When patients ask about the test, I refer them to the e-mail and article. Then, if they have more questions, I talk to them. It just makes my life much easier this way."

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Just because you read it online...

Some common online messages that have bounced from computer to computer over the years:


  • Freezing and cooking with plastic bottles can cause cancer.
  • Bras can cause breast cancer.
  • Antiperspirants cause breast cancer.
  • Tampons contain asbestos that makes you bleed more.


  • A teenager died huffing Dust-Off brand compressed air (since reformulated to prevent abuse).
  • Drug products containing PPA (phenylpropanolamine) were pulled from the market due to FDA concerns over a possible connection to strokes. (Though the recall happened in 2000, not recently, as commonly forwarded e-mails claim.)
  • The price of generic drugs can vary widely from one pharmacy to the next.

Sources: Centers for Disease Control and Prevention, Health Related Hoaxes and Rumors; Urban Legends;; Food and Drug Administration

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Urge patients to examine message

The CA-125 blood test rumor is hardly the only health-related e-mail message floating around the Internet. For physicians, the challenge is to work with patients to separate fact from fiction.

Experts say that physicians should first tell patients to read all e-mail warnings carefully. While many will turn out to be hogwash, others may contain valuable, even lifesaving, health information.

Physicians should advise patients to do the following in order to assess the validity of an e-mail message:

Google it. Type some of the e-mail's key words into a search engine and see what comes up. Patients may be directed to legitimate Web sites that will either substantiate or discount the rumor, says Thomas McClintock of NSI Partners, an Internet consulting firm in Gaithersburg, Md.

Keep clicking. Exploring linked sites can help patients dig deeper and more fully comprehend the overall health issue involved. In essence, the more information patients can amass, the better they will understand the issue, McClintock says.

Verify the source. Messages sent by reputable organizations and credentialed professionals are most likely to be valid. Even when a rumor is attributed to a known source, however, it's still a good idea to go to the organization's Web site for validation. For example, a recent e-mail rumor about the dangers of freezing plastic water bottles is attributed to Johns Hopkins Medicine. But the Johns Hopkins Web site carries a disclaimer stating the message is not accurate and Johns Hopkins had nothing to do with its creation and dissemination.

Check rumor-tracking sites. Various Web sites, including, and, document or contradict the validity of e-mail rumors.

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The patient behind the CA-125 e-mail

It's often difficult to trace the origin of a viral e-mail. But that's not true of the CA-125 note. Carolyn Benivegna of Novi, Mich., a 65-year-old mother of three grown children, has been an advocate for ovarian cancer treatment and patients since she was diagnosed. In an e-mail exchange with AMNews business editor Bob Cook, she explains why she sent the note, her surprise at its reach and her struggles with the disease:

"I was diagnosed with stage IIIC primary peritoneal cancer (aka ovarian cancer) in May 1998, so it's almost 10 years ago. I wrote the original e-mail because I was angry that nobody had told me I could still get ovarian cancer even though I'd had my ovaries removed. I was also angry that nobody had told me about the CA-125 blood test, even though I had a family history of breast and ovarian cancer. I felt that doctors had owed me that information.

"The CA-125 was the only thing that finally diagnosed my cancer, and it would have been diagnosed earlier if I'd been given the test immediately when I went to the doctor with classic ovarian cancer symptoms. Though this test is not 100% accurate, I still feel it is underused and undervalued.

"I sent my e-mail out to about 20 people and asked them to send it to everyone they knew, etc. etc. I don't think we have a prayer of stopping its dissemination. And, that's OK with me. Many women have written to me about being diagnosed with ovarian cancer because they read my e-mail and recognized themselves and insisted on the test. Frankly, the argument that says it might cause unnecessary surgeries just doesn't hold water. Nobody is going to rush to surgery based solely on a CA-125 test.

"No matter where I go, I am asked about that e-mail. Yes, I am surprised that it has taken on a life of its own. If it has done nothing more than raise the consciousness of people about ovarian cancer, then I'm glad I wrote it. At the time, I had no idea how powerful the Internet could be. The one thing that has shocked me is that 'Kathy West' plagiarized my e-mail and has claimed it as her own and is circulating it on the Internet. Amazing what people will do.

"Yes, I've managed to have quite a bit of success in the ovarian cancer education and awareness arena [beyond the e-mail]. I am now focusing on research and have recently established an endowed fund for ovarian cancer research at the University of Michigan in the name of my husband and myself. [I hope] that my friends and family keep funding it long after I'm gone.

"My health is declining and it's getting harder and harder to battle this beast. I've had a long run, but I fear this might be the beginning of the end for me. It's getting more and more difficult to find drugs that might put me in even a brief remission. I'm sick and tired of being sick and tired.

"I don't know how much longer I have on Earth, but I've had a good run."

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