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Are you giving your doctor a headache?

By Elizabeth Cohen, CNN Senior Medical Correspondent
Some doctors are irritated by patients who consider themselves to be experts even though their actual knowledge is limited.
Some doctors are irritated by patients who consider themselves to be experts even though their actual knowledge is limited.
STORY HIGHLIGHTS
  • A presentation about difficult patients on QuantiaMD has drawn plenty of ire
  • Although "Internet patients" might be annoying, online information has saved many
  • Patient advocates, doctors agree there are good and bad ways to share online information
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(CNN) -- You might not realize it, but your doctor could be complaining about you online.

He or she isn't using your name, of course, but rather descriptions such as "The Angry Patient" or "The Patient Who Knows Too Much."

It's part of a physician-to-physician educational presentation titled "Managing the Difficult Patient" on QuantiaMD, which has drawn thousands of views from doctors and a good bit of ire from patients. (You must register to view, but it's free.)

"If you look at their videos, they seem to want to get rid of these patients," says Sherry Reynolds, who tweeted about the "startling views" expressed in the videos.

"Honestly, I was a little shocked when I saw it," adds Amy Tenderich, founder of the popular website DiabetesMine.com. "It was upsetting to see them take such a defensive stand."

"The Patient Who Knows Too Much"

In particular, the segment "The Patient Who Knows Too Much" has angered patient advocates such as Reynolds and Tenderich. In it, a fictitious patient named "Will," represented by a nerdy looking avatar holding a laptop computer, deluges his doctor with information about "one disease or another" that he's learned online about

In the presentation, three doctors comment on the challenges Will poses.

"They consider themselves an expert yet often their true medical knowledge is quite limited," says Dr. Joseph Scherger, vice president for primary care at Eisenhower Medical Center in Rancho Mirage, California, who says patients like Will are "indiscriminate" about the material they read online.

"Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise," adds Leonard Haas, a psychologist at University of Utah School of Medicine.

"Sometimes these patients are very overweight. They're out of shape," Scherger adds. "They're on the Internet all the time."

Difficult -- but not dead

Reynolds and Tenderich say while doctors may find so-called "Internet patients" annoying, online information has saved many.

"If my mother hadn't been a 'difficult patient,' she'd be dead right now," says Reynolds, adding that her mother's breast cancer doctor didn't sufficiently check her lymph nodes after performing a lumpectomy.

After doing research online, Reynolds decided to take her mother to another doctor, who found cancer in some of the nodes and removed them. Twelve years later, she's still alive.

Tenderich remembers how she broke out in hives on her neck, face and hands seven weeks after learning she had diabetes. A dermatologist told her the hives were probably a result of being stressed about the diagnosis, but patients online told her some diabetics develop a wheat allergy. Tenderich then went to an allergist, who confirmed the diagnosis.

"Only through talking to patients in the community did I learn the truth," Tenderich says.

"The title 'The Patient Who Knows Too Much' is condescending," she says. "It's unfortunate these providers are not recognizing their patients as intelligent people and showing a little more respect."

Jill Raleigh, executive director of the LAM Foundation, a group for patients with a rare lung disease, also took issue with the QuantiaMD presentation.

"Oftentimes our patients' physicians know very little, if anything, about LAM," Raleigh says. "Many of the patients actually educate their doctors on the latest research and sometimes even the basics of the disease."

An unfortunate title

Mary Modahl, chief communications officer with QuantiaMD, says her company now realizes "The Patient Who Knows Too Much" is "a very poor title."

"Certainly a patient can never know too much," she says. "In every way we're supportive of doctors meeting their patients' need for care."

She added that the purpose of the segment was to teach doctors to deal with patients with a certain psychiatric disorder.

"Will" calls or visits the doctor every other week with a whole host of complaints, such as headache, palpitations, diarrhea and fatigue, and has sought the help of numerous specialists, all of whom believe he has panic disorder.

But patient advocates told CNN they didn't interpret the video that way. Instead of being narrowly focused on a patient with a mental illness, the advocates said the doctors' comments felt like a wholesale criticism of patients who do health research on the Internet.

The doctors in the QuantiaMD presentation tell doctors to listen to patients like Will, give them reading assignments from credible sources and encourage them to have a healthy lifestyle.

In interviews with CNN, the doctors say patients who do online research sometimes take up precious time during an appointment asking irrelevant questions.

"They think they have dengue fever or mad cow disease, and it takes an extra five, 10 or 15 minutes to explain to them why they don't," says Haas, who teaches University of Utah medical students how to communicate with patients. He added that getting information from other patients online is dangerous because "you don't know who these people are."

The doctors were quick to point out, however, they don't want to discourage patients from educating themselves.

"To me the Internet is the greatest revolution that ever happened to human civilization," Scherger says.

"We want to empower patients. We want these individuals to make medicine kinder and safer," adds Dr. Gerald Hickson, director of the Center for Patient and Professional Advocacy at Vanderbilt University Medical Center.

"I can understand how some patient advocates could be offended, but that was not my intent," Hickson said. "My intent was to focus on the doctor who may not appreciate the empowered patient, and I want to remind my colleagues we have a duty to meet the patient where they are."

Bringing online information to your doctor

Patient advocates and doctors agree there are good ways and bad ways to share online information with your doctor. Some tips for presenting the information effectively:

-- Don't be afraid to be a "bad" patient. Patients who press their doctors sometimes get the best results

-- Share Internet information with your doctor wisely. Don't walk in with a stack of printouts that your doctor won't have time to read during the appointment. Instead, e-mail the information to your doctor before the appointment or boil the information down to a few points.

-- Don't be a cyberchondriac. Every headache isn't a brain tumor.

The Empowered Patient has more information about the best ways to communicate online information with your doctor, as does Trisha Torrey, About.com's patient-empowerment expert.

CNN's Sabriya Rice and Lida Alikhani contributed to this report.

 
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