Rumor control: How to battle online misinformation

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."