Secure web sites can improve communications about critically ill patients for hometown physicians and loved ones

Password-protected Web sites can improve communications about critically ill patients for hometown physicians and loved ones, according to a study by researchers at Doernbecher Children's Hospital. The study was published in the September issue of Pediatric Critical Care Medicine.

Pediatric intensivists in Doernbecher's Pediatric Intensive Care Unit (PICU) at Oregon Health & Science University created the first Web site to serve patient families and their physicians in 1999 for a study on Internet communication. The Web site allowed hometown physicians to view physician notes and diagnostic images. At the same time, families could see photos of the children, check their progress, and read notes from nurses and family. Physicians and families both felt it improved communications.

The study found 73 percent of the primary care physicians who used the Doernbecher PICU Web site felt it was easier than communicating with hospital physicians via the usual methods, of phone calls and faxes. Unexpectedly, 54 percent of the physicians also indicated they would prefer to send their patients to a hospital that offered this type of Web communication.

Seventy-seven percent of families and friends thought the Web site helped them share information about their critically ill loved one.

"We found that individualized patient Web pages worked and were even better than we had expected them to be," said Dana Braner, M.D., principal investigator, professor of pediatrics in the OHSU School of Medicine and medical director of Doernbecher's PICU. "The Web gave us an easy-to-implement communications tool that can be used to communicate with both the families of our patients and referring physicians."

Gail Andersea and her family were one of 78 families to participate in the study and use the Web site. For Gail it was a vital link between her daughter, Ashleigh, who was in the Doernbecher PICU for several days and her husband, Richard, who traveled on business. Ashleigh died while in the hospital. Gail kept all the e-mails from family and friends as a cherished memory of her daughter.

The Web site provided two-way communication for families and health care providers. More than 1,500 nurses' notes and patient photos were posted. Distant family members and friends sent an almost equal number of e-mails. Braner said this made families feel empowered to control the exchange of medical information and may have played an important role in their ability to cope with their child's critical medical condition.

More than half of the 1,200 children treated in Doernbecher's PICU each year come from regions outside of the Portland metro area, including Washington, California and Alaska. This distance creates a challenge for hometown physicians who want to stay up to date on their patient's medical care and for families who are far from emotional support.

"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 his or her patient's progress. It is difficult trying to connect family and hospital physicians' schedules so they can talk by phone," said Braner. "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."

One physician who responded to the study survey commented:"This [Web site] makes me feel like I am there taking care of this child with you."

Everyday medical information such as progress notes, radiological images and medical videos were posted to the physician site for that patient's hometown physician. Photos of the child, nursing notes and family messages were posted on the family Web site. Each site was password-protected and hosted on OHSU's secured server. Patient families provided loved ones with their password, while primary care physicians could only receive the password from Braner.

Braner's research team looked at the use of the Web site from April 2000 to January 2003. During that time, 78 families used the site along with 22 hometown physicians. Critically ill children who were expected to stay in the PICU for longer than two days were included in the study, with their parent's consent.

The study was funded, in part, by The Ford Family Foundation of Roseburg, Ore.

The study authors suggest the ultimate goal should be increased parental understanding of their child's medical condition; improved communications for families separated by great distance; parental and family satisfaction and improved care by primary care physicians when the child returns to his or her community - to improve the health of the child and reduce further hospitalizations.

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