Blogging From Your Sickbed

Diagnosed with diabetes five months after the birth of her third child, free-lance writer Amy Tenderich, 37, wanted to share what she was learning about glucose monitors, insulin injections, carbohydrate counts -- and coping with the disease. Last February, she started her own Web log, or "blog," diabetesmine.com.

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. 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.

No one officially tracks patient blogs, but there are "hundreds of thousands" of people blogging about illnesses, caring for parents, dealing with end-of-life issues and pregnancy, estimates David Sifry, founder of blog search engine Technorati.

Now health-care groups, hospitals and disease-advocacy organizations are trying to encourage and even sponsor some form of blogging to help patients share their experiences. It's an expansion of efforts at many hospitals that already allow patients to set up Web pages to share treatment updates and photos of newborns. In North Carolina, High Point Regional Medical Center last month launched a pilot program with three patients who have set up their own first-name-only blogs using the hospital's Web site. At a recent conference sponsored by the American Cancer Society's Futuring and Innovations center, several national disease organizations discussed how to incorporate blogs into their patient-communication efforts. In one pilot program, the cancer group's New York-New Jersey chapter recently asked prominent local leaders to write some basic personal online journals chronicling their experiences with colonoscopy.

But like any health information on the Web, caveat emptor applies. Even the most dedicated and savvy patients aren't medical experts, and relying on any medical advice from blogs is unwise without checking with your doctor. Some bloggers post links to independent medical data, but that information itself may be flawed or out of date. And one blogger's experience and expertise may be limited and even misleading to others. "All personal stories about health issues, including those in blogs, are clinical studies with a sample size of one," says Marisa Weiss, an oncologist and founder of the patient-information Web site breastcancer.org.

Some blogs link to ads for related products or services, which bring in ad revenue. But sites packed with commercial pitches may just be sales tools, especially if there is no personal information offered about the blogger.

"The verdict is still out on how this is going to evolve -- and how people entering this new blogging environment will be able to sort, filter and create reliable information," says American Cancer Society deputy chief medical officer Len Lichtenfeld.

The cancer society, which doesn't host blogs, says it carefully vets the information it offers on its Web site. And its Cancer Survivors Network, which hosts online discussion groups, has staffers who police the boards and can delete posts that violate the site's protocols -- such as commercial pitches. The society also says community members are "self-policing" and vigilant about reporting anything they think is suspicious. But the medical community is still trying to figure out how or whether to apply any such controls to blogs.

Dr. Weiss of breastcancer.org says blogs may allow for "more expansive self-expression," but for the most part, "they don't provide the same sense of community" as discussion boards. And though the "passion of personal detail" is valuable, she adds, a blogger's account "may not be representative of the average experience."

Weblogs Inc., a network that sponsors some medical and health-related blogs, relies on editor in chief Judith Meskill's personal "trust filter" when selecting bloggers for its Cancer Blog. Essentially she goes with her instincts on whether a patient or health-care professional seems legitimate -- such as a young ovarian-cancer patient who is blogging about juggling treatment with law school. "We don't vet the information, but we bring people with something to say to the table and readers can evaluate it using their own judgment," Ms. Meskill says.

1995-2005 Mary Blocksma all rights reserved.   On her blog, Mary Blocksma writes about her experience with breast cancer and posts her original artwork.

Posting personal information on an easily accessible public blog can be risky for patients who create blogs using their own names and identifying information. Mary Blocksma, a Michigan breast-cancer survivor, writer and artist who started a blog recently about her experience with treatment, says friends have been urging her to write about sex after cancer, but she hasn't yet dared. "I'm trying to find a way to reassure women going through all this and still protect my lover's privacy," she says.

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 acor.org 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.

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."

	Sponsored by