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When Rochelle Coleman's son, Marco, was diagnosed with leukemia at 4 months old, she wanted a way to keep her family in Texas, California and Mexico updated on his health. That's when the staff at Children's Hospital of Wisconsin's Daniel M. Soref Family Resource Center told her about CaringBridge personalized Web pages.
"I started it because it was something to keep me busy and keep me out of the room," said Coleman, who lives in Milwaukee. "I have an easier time writing about how I feel than I do when I talk about it. It's almost like a diary."
Personalized Web pages are becoming popular at hospitals across the country as the federal Health Insurance Portability and Accountability Act, or HIPAA, limits the amount of patient information staffs can provide. For families, the Web page means fewer phone calls and less time sending and responding to e-mails. The sites, which feature the sponsoring hospital's information, also serve as marketing tools, with some even providing links so visitors can purchase gifts through the hospital's gift shops and have them delivered.
Children's Hospital is the only sponsoring hospital in Wisconsin using the system by CaringBridge, a nonprofit company in Eagan, Minn. CaringBridge charges hospitals an average $2,500 a year to have their hospital logo and contact information included on the pages, said founder and executive director Sona Mehring. The company gets 80 percent of its funding from users of the site with the remainder coming from its 38 sponsors and foundations.
"They only have to post what's going on in a central spot and people come to that spot and you can respond to them altogether," Mehring said. "It's helping people communicate when they're going through a crisis."
CaringBridge's competitors include for-profit companies such as TLContact Inc., Chicago, which operates CarePages, and Public Knowledge Systems L.L.C., Anchorage, Alaska, which runs TheStatus.com .
Children's Hospital started offering the service in March 2001 to relieve some of the stress for patients' families who would fret over leaving someone off their e-mail lists, said Julie Turkoske, information and referral specialist for the Daniel M. Soref Family Resource Center at Children's Hospital. The hospital has 10 computers at various locations where families can create CaringBridge pages. The resource center also has three digital cameras families can borrow so they can put photos on their pages.
The site allows page creators to select the level of security they want, even allowing them to block some e-mail addresses from viewing information. To access the pages, visitors must have the complete Web address, which is often passed along by family and friends. Turkoske said CaringBridge has been especially popular among patients who stay in the hospital for long periods and those who live outside the area.
TLContact started its CarePages in 2000 and is working with 300 hospitals, including the hospital at the University of Wisconsin in Madison. Erin McDaniel, marketing manager, declined to disclose how much the company charges.
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