Web Zap*Germs Archive

May 04, 2005

The Patient as Blogger

Laura Landro writes the column, The Informed Patient, in The Wall Street Journal. Her latest offering (subscription req'd] discusses the growth of blogging by people suffering from a variety of illnesses.
The ubiquitous personal Web sites known as blogs have become a significant new forum for health-care consumers. Easily created with free Web-based services or software programs that let you instantly post information and reader feedback, blogs allow Web-savvy patients like Ms. [Amy] Tenderich to chronicle their experiences with everything from Alzheimer's and cancer to gastric-bypass surgery and childbirth, often providing links to the latest medical studies and news.

For the legions of Web users who go online for health information each year, blogs present a new and more personal alternative to the plethora of disease-related Web chat rooms, message boards and email discussion groups, which typically let hundreds or even thousands of registered users send emails to each other through a central server.

This article suffers from the typical back-n-forth of its genre: blogs are good for sharing personal info, but on the other hand, the audience doesn't know for sure the bona fides of the writers [who am I, anyway, right?], and what about them dang ads?
Ms. Tenderich identifies herself as a San Francisco resident on her blog. "I'm not going to be posting my credit-card information, but I want it to be personal -- the whole point of being an advocate is to use your experience to help someone else," she says. She posts a small picture "so people can see I'm relatively fit and living with this thing, and not a 400-pound diabetic." Her blog features some links to ads for diabetes products and services, but she contends that won't affect any reviews or comments she makes.

The Association of Cancer Online Resources, which sponsors email discussion groups on various forms of cancer at its site, is now weighing a plan to help subscribers set up blogs. ACOR founder Gilles Frydman predicts there will be password-protected blogs to protect people's privacy in the future. That would be similar to the strictures placed on many email lists and message boards. ACOR and other groups typically require subscribers to their email lists to register and use passwords; list managers oversee the traffic and attempt to filter out any curiosity-seeking interlopers, commercial emails or anyone making unsupported claims of a cancer cure.

In the end, though, she reckons blogs are good after all (whew!):
While many blogs are meant to reach a broad audience, they can also be used to keep friends and family members informed during a long or difficult treatment. When his wife Donna was diagnosed with breast cancer, requiring a lumpectomy, radiation and chemotherapy, Harvard Medical School associate clinical professor Charles Safran says they were overwhelmed with calls and inquiries, so he asked friends at work to help start a blog so he could post weekly updates and friends could post messages to Donna.

Within a week more than 50 people he had notified via email logged on to the site he created. "The blog helped us form a community of concern and support for Donna," says Dr. Safran. "It certainly was therapeutic for me." While still new to health care, he predicts, "blogs will become one of the tools that help families cope with serious illness."


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