A group of Japanese atopic dermatitis patients and their families set up an online conference room to exchange information on treatment — then asked doctors for their opinion.
Cosmos Net, managed by Hiroaki Mitani, was created in 1997 and has since racked up more than 280,000 hits.
While the number of visitors to the site rose sharply after doctors began to participate, some medical professionals are concerned about offering their wisdom in such an unfamiliar forum.
“We are exposed as if on a stage with all eyes on us,” said Ryoichi Kamide, assistant professor of dermatitis at the Jikei University School of Medicine.
The caution he and other doctors feel is not unfounded. One anonymous expert sparked extended debate on Cosmos Net when he touted the use of steroids for external application, a controversial topic.
“It is the job of dermatologists to properly use it with due consideration given to its side effects,” the assumed expert wrote.
But unlike in consultation rooms where patients usually bow to the doctor’s opinion, patients challenged the expert and expressed their distrust of the treatment they were receiving.
Still, patients appreciate the site. “It is good that you can easily get a second opinion,” one said.
Perhaps to ease doctors’ worries, the Japan Dermatitis Association in July began offering free consultations to atopic dermatitis patients by e-mail and fax. There were more than 600 such consultations during the first month.
Some sought an open forum like the online conference room for the free consultations, but Kazuhiko Takehara, a professor of dermatitis at Kanazawa University, said he prefers to deal with patients one on one.
Takehara said he recognizes the advantage of the conference room as a site for free opinion exchanges.
However, he fears that patient-specific recommendations may be taken out of context by private companies and used in a general manner to promote products. “Confusion about atopy mainly lies there,” he said.
As Kamide stressed, “Treatment of atopic dermatitis patients is more exhaustive than other treatments, requiring considerable skill.”
Despite conference room rules banning them, business promotions and anonymous contributions regularly appear on Cosmos Net. Some companies go so far as to assume an individual name and write in product-pushing comments such as: “This treatment is effective. Why don’t you try it?”
But Mitani said these messages have been ignored recently. “It is important for you to acquire an ability to choose meaningful information from among a mixture of good and bad information.”
Kamide hopes the conference room will develop into a medical community. “For doctors, learning from exchanges (on the home page) is also quite meaningful,” he said.
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