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Patient Web sites used for news, support in crisis

ASSOCIATED PRESS

Children’s Hospitals and Clinics of Minnesota has been using CaringBridge since its beginning and helps families do updates by providing computers and digital cameras. President and CEO Alan Goldbloom said the hospital draws patients from around the Midwest, so some families are hundreds of miles from home when their child is in the hospital.

“We just think it’s made a huge difference for families,” said Goldbloom.

People learn about the Web services from hospital workers, or just through word of mouth, according to the founders.

Dr. Ron Davis knew of two people who used them during illnesses. So when he was diagnosed with pancreatic cancer this year, the preventive medicine specialist decided to share his story.

As AMA president, Davis, 51, figured others would want to know what was going on. And he’s using it as an educational tool, providing the details of his treatment, with lab results, and to spread the word about the value of the Internet services.

“We need as physicians to focus more on the patient’s emotional needs,” said Davis, of East Lansing, Mich.

DeBronkart had heard about CaringBridge from a colleague when he was working in Minnesota.

“When my time came, I said, ‘I know what I’m doing,’” deBronkart said.

A self-described e-mail maniac who works in computer software marketing, the 58-year-old deBronkart was soon doing frequent, chatty entries, sometimes from the hospital in the middle of the night.

“It lets you stay in touch with people, even if you literally can’t get out of your bed and they’re thousands of miles away,” he said.

He’s racked up more than 16,000 visits to his Web page, some from old friends and classmates that he’d lost touch with over the years. “It really went viral,” he said.

Anne deBronkart used it to keep tabs on her son between visits from her Maryland home. She said it was better than group e-mails because she drew support from all the posted messages, particularly the humorous tales some contributed.

“We all need that when we’re going through something like this,” she said.

The mother of Marine Lance Cpl. John Doody uses CaringBridge to keep in touch with his Marine buddies, friends and relatives in the Denver area, where he grew up, and her new husband and friends in Idaho.

Chris Ott has been at her son’s side since January when he collapsed while recovering from gunshot wounds from Iraq and suffered brain damage. For a time, she stopped answering her phone because “it was too painful to talk about it.”

Her sister set up the Web page and soon Ott was posting updates, writing about each step in her son’s recovery, the move from San Diego to a Veterans Affairs rehabilitation center in Tampa, Fla., and outings to the mall and beach. News that her 25-year-old son had begun to talk again brought a flurry of excited replies.

“It helps lift your spirits when you know people are thinking about you and praying for you,” said Ott, who was married at her son’s bedside in February.

(Associated Press)