CarePages connects patients, families on the Web

CNY Business Journal (1996+), May 13, 2005 by Tampone, Kevin

SYRACUSE - Scott Carlin's daughter, Alyssa, was born in February four months premature. She weighed about one pound.

As Alyssa fought for her life in Crouse Hospital's neonatal intensive care unit, Carlin's family and friends wanted updates.

"One of the big things I noticed in Alyssa's first few days of life is that between my wife and [me], we were answering 20 to 30 phone calls a day," Carlin says. "It was really tiresome to tell the same story over and over again. Not that you didn't want to. If was just tough."

So Carlin took advantage of anew service Crouse began offering about three months ago to help him keep his family and friends up to date on Alyssa's progress. The service, called CarePages, allows hospital patients and their families to create their own secure Web pages.

Family members or patients can post health updates and even photos on the sites.

Carlin's daughter is improving. He says CarePages helped everyone he knew to stay connected with her struggle.

"One of the main advantages is psychological," Carlin says. "We can really write down all our feelings. And you're talking to everyone at the same time. That's a huge help."

The service meant people from around the world could monitor Alyssa from afar. Carlin says family and friends from all over the country and world view the site regularly.

Some of those people would have little, if any, information on Alyssa had it not been for CarePages, Carlin says.

The service, a product of TLContact, Inc., a Chicago-based company, cost Crouse about $30,000 to start. The Crouse Health Foundation provided money for the program's first year.

The hospital is seeking corporate sponsorship to keep the program running next year, says Robert Allen, a Crouse spokesman.

Clients access the system through six computer terminals scattered around the hospital. Crouse is adding two more CarePages stations in the next few weeks, Allen says.

The computers have access only to the CarePages site. Patients or family members log in, follow a few steps, and have their site up and running within minutes. Carlin says it took him about five minutes to establish his daughter's site.

Family and friends access CarePages through a link on Crouse's Web site. They can even post messages and well-wishes.

All of the sites are accessible only by password to protect patient privacy, Allen says. The system raises no red flags with the Health Insurance Portability and Accountability Act (HIPAA) because all the content on the sites is patient-generated.

HIPAA, passed in 1996, contains tight controls on how health-care providers handle patient information.

"Because the hospital doesn't maintain or input the information, we don't have any of those issues," Allen says. "They're the ones who put all the information in. We just make the service available and point them in the right direction."

The benefits of CarePages for Crouse patients and their families are obvious, says Dr. Paul Kronenberg, hospital president and chief executive officer.

The sites improve communication and, echoing Carlin, help families cut down on the amount of time they spend on the phone, Kronenberg says. CarePages also reduces another familiar phenomenon of hospital stays.

"You get rid of the rumor," Kronenberg says. "There's only one story when everybody visits the Web page. It's not Aunt Tilly telling Uncle Sam, 'Well, I think this is what she said."'

Family members accessing the sites get the benefit of updated, accurate information, but also don't have to wade through a series of telephone calls with hospital staff to stay in touch with their loved ones.

"They don't have to call blindly somewhere,"' Kronenberg says. "Sometimes if you have a family member, you call the floor ... [but] the nurse on the floor [is] not allowed to give out information. So now you say, 'They won't give me information, I wonder what's happened.' Really, it's just a matter that they can't give out information."

CarePages reduces all of those problems, Kronenberg says.

Crouse clients are now running about 65 CarePages sites.