Thursday, March 30, 2006

WSJ: Personal patient sites create closed user-generated content



WSJ: Personal patient sites create closed user-generated content


Personal patient Web sites, like and, are gaining popularity, according to the Wall Street Journal (WSJ). The sites, which are operated or contracted by hospitals, allow families and patients to chronicle their illnesses and share experiences with an online community. CarePages sites aren't accessible via online searches and users choose who does or doesn't have access. Caringbridge, the other main provider, has more than 36,000 active sites and has logged about 207 million visits, says WSJ. Caringbridge partners with sponsors, most of which are hospitals, according to the site. Many hospitals provide their own personal Web pages for patients and some offer bedside Internet access, says WSJ. Click the link below to read the full WSJ story.






Health: Sites Give Patients and Families Online Lifelines to Loved Ones

When Sean Brame marked his 10th birthday this month, well-wishers around the globe celebrated with him.

Their point of contact: a patient Web site updated daily by Sean's mother, Carol Brame, who has chronicled Sean's yearlong fight with and recovery from toxic shock.

On April 22, 2005, four days after Sean arrived at Pennsylvania State University Children's Hospital in Hershey, Pa., his mother sat down at a computer and typed: "We faced the facts today that we will never have the same boy we had last week, but no illness can steal his heart, his smile or his love for others."

Over the next five days, doctors fought to save Sean's life, amputating both of his legs below the knee, his right hand below the wrist and all but his index finger on his left hand.

For Carol Brame, the Web site was her lifeline to friends and family. She isn't alone. Patient Web sites have mushroomed over the past few years. Some are run by hospitals and others, like the CarePages service Carol Brame uses, are contracted by hospitals. The company, which started in 2000, has contracts with 450 health-care facilities nationwide and traffic to the sites spurted 400% last year. provides private and secure sites that are fully integrated with the hospital or clinic. The pages can't be found with a Google search, and patients and families pick who gets access and can block unwanted visitors. The other main provider,, partners with 50 sponsors, such as medical centers, hospitals and other organizations, including one community fire department. The nonprofit has more than 36,000 active sites, and has recorded some 207 million individual "visits." In 2005, 83% of its funding came from people who used the service.

Many hospitals, seeing the benefits and popularity of personal Web pages for patients, provide their own and in some cases offer Internet access at the bedside.

For Carol Brame, the CarePages Web site has been a lifeline. At the urging of hospital staff, Mrs. Brame set up a CarePages site to let others know about Sean's condition. The middle-school teacher from York Haven, Pa., says she simply didn't have the time to respond to dozens of daily phone calls and emails from concerned family, neighbors, friends and colleagues.

The response was far beyond what she expected.

The site kept Mrs. Brame's brother Lt. Col. Richard Denison Jr., a minister on duty in Iraq, abreast of every surgery. "Carol, all our soldiers and airmen in Iraq are praying for Sean," Rev. Denison wrote in one of the earliest messages.

As word of the site spread, the community responded. An anonymous donor sent pizza for the nurses after Mrs. Brame wrote about their dedication. The local Orange Crush distributor delivered three cases of the soft drink after a mention that it was Sean's favorite. A local hot-wings restaurant owner raised $12,000 with a concert for Sean. And the Harrisburg City Islanders soccer team surprised Sean at the hospital, vowing to help the young athlete back on his new prosthetic legs. "I would just mention it on the CarePage and it would get done, " Mrs. Brame says.

For parents with chronically ill children, the sites can be therapeutic. Lori Todaro of Carlisle, Pa., recently set up a CarePages site about her son Nino, 7 years old, who had been diagnosed at 16 months with periodic fever syndrome, a disease that affects the immune system, and is a patient at the Children's Inn at the National Institutes of Health in Bethesda, Md. "It's a lonely feeling having a sick child," she says. "To be able to log on and pour out your heart and get response back makes you feel not so alone."

In 2003, Laura Mullen of Gaithersburg, Md., set up a Caringbridge site after her son, Kevin, now 14, was diagnosed with Hodgkins lymphoma. "You're exhausted, because you've been up whole day with your child," Mrs. Mullen says, "you can only send just so many emails at a time."

Some hospitals are taking the idea further, providing bedside Internet access. The Monroe Carell Jr. Children's Hospital at Vanderbilt University in Nashville, Tenn., installed computers in every patient room and wireless connections in its new building, opened in 2004. Sallie Hussey, the hospital's director of community and family services, says pediatric patients can build and update their own secure Web sites without leaving their beds.

Aziza Shad, director of Pediatric Hematology/Oncology at Georgetown University Hospital, which partners with, believes the sites do help. " It's a fabulous tool that keeps the patient happy and helps to keep families connected to each other," she says.



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