Web Site Assists Families and Doctors of Critically Ill Children at Doernbecher

10/24/00    Portland, Ore.

One-Of-A-Kind Web Site Is Information Lifeline For Family Members.

When Richard travels for business it breaks his heart because it means he has to be away from his 9-month-old daughter, Ashleigh, who is in the Pediatric Intensive Care Unit, or PICU, at Doernbecher Children's Hospital. But for the first time a new Web site allows him keep an eye on his little girl no matter where he is in the country. He evens e-mails notes that Ashleigh's mother reads his daughter, reminding her he loves her.

"He feels 100 percent better and closer to us when he can get online and look at photos of her in the hospital," said Gail, Ashleigh's mom.

The site was developed by physicians at Oregon Health Sciences University's Doernbecher Children's Hospital to improve their communication with the child's family physician while the child is in the hospital. But the site is proving to be a valuable tool for families as well. The team at Doernbecher who designed the site, and is investigating its benefit to physicians, hopes this improved communication will help the family physician have more resources and information for follow-up care once the patient goes home. The Web site also offers patients' families a resource to keep other family and friends informed of the patient's progress, and a secure e-mail system for the family to communicate with the hospital physician. The Ford Foundation of Roseburg, Ore., is funding this three-year study of the Web site.

"Academic health centers have always had a challenge trying to communicate with family physicians. When a patient is admitted, the physician the family has come to know and trust most often loses touch with their patient's progress. It is difficult trying to connect family and hospital physicians' schedules so they can talk by phone," said Dana Braner, M.D., principal investigator, associate professor of pediatrics in OHSU's School of Medicine and intensivist at Doernbecher Children's Hospital. "If at 4 a.m. the family physician wants to see his or her patient's X-ray, or at noon, they can access it on our Web site. It's our duty to try and find better ways to communicate with family physicians so the child can receive the best possible care when he or she leaves the hospital."

Through the Web site, family physicians have access to the hospital physician's notes, nurse's notes, consultation notes from other specialized hospital physicians, X-rays, digital video of diagnostic procedures and digital photographs of the patient. Thanks to the already existing technology in the PICU's state- of-the-art Media Lab, all of the digital images are compressed into files, allowing physicians to download it in a matter of minutes, even using the slowest computers. Every morning a full-time computer technologist -- hired specifically for this research project -- takes photos of the patients and inputs all the latest information on the patient's progress by noon that day. Co-investigator on the study, Laura Ibsen, M.D., says this speedy turnaround time allows family physicians to access daily updates on all the specifics of their patient's progress and care in real-time any time of the day. "The site has been extremely useful to get minute-to-minute information and a clinical status on my patient," said Richard Cohen, M.D., Ashleigh's Kaiser Permanente physician. "I find the clinical information informative, useful and it helps me to have meaningful dialogue with the family."

The site is secured in several ways. The Doernbecher physician tells the family physicians, personally, what the login name and password are, as well as the randomized bed number the patient is in on the site. The bed number on the site does not coincide with the bed number on the unit, and the patient's name and medical record number are not included on the site. In addition, OHSU's secure server administers the Web site, much like those used for credit card numbers. The site also allows family physicians to e-mail the patient's hospital physician securely with any questions or comments without going back on to the Web site.

The family gets its own login and password, which they can share with friends and family, that allows them to access photographs of the patient, family notes, links to other sites, and a physician's generic summary of the condition the patient. There are two laptop computers that can be plugged into any telephone jack to offer access to the Web site for families who don't have home computers.

Ken Goe, father of injured football player Justin Goe, said the Web site was a lifeline for them during their stay in the PICU at Doernbecher. The site, he said, cut down on phone calls into Justin's room and to his immediate family. "I have four brothers and sisters around the country who used this to get firsthand information on Justin. And the pictures of Justin helped a lot. I think it's a great tool," said Ken. It also was a huge benefit to Justin's friends at Rex Putnam High School. According to Ken, Justin's friends accessed the site through the school office and sent several e-mails of support to Justin.

To participate in the study, patients must have an expected stay in the PICU of at least three days, and families must consent to the posting of their child's medical information on the Web site.

Braner says the next phase of the study will look at the effectiveness of face-to-face communication using digital video cameras.