Winter 2007

Wired NICU Connects Patients, Parents and Physicians

Yao Sun, M.D., Ph.D.

The Neonatal Intensive Care Nursery (NICU) is possibly the most data-rich environment in UCSF Benioff Children's Hospital. Round-the-clock monitoring and charting by a cadre of specialists and a slew of machines create a lot of information about the health of these tiny patients.

UCSF sees gold in this data mine. "A lot of this data is stored in ways that make them not easily accessible or useful" to those who need them, says UCSF neonatologist Yao Sun, M.D, Ph.D. "This information should be available in a secure way to referring physicians, parents, nurses, administrators and researchers."

Led by Sun, UCSF is moving rapidly to become the first hospital in the United States to create a system that allows these groups easy access to this data. "Other hospitals have electronic medical records, and a lot are trying to create a way to collect clinical research data," he says. "But what no one has yet done is to try to uniformly collect and organize the data, as well as create the information infrastructure and applications to serve all those groups."

Parents are perhaps top most in Sun's mind as users of such a system. Families often come to UCSF from far away and can't stay at the hospital or nearby 24 hours a day. Many have to go back home because they can't be away from work for long. "This gives parents a way to get information about their baby and participate in their care from afar," Sun says.

Sun and his colleagues are considering supplying parents with a direct video feed of their baby and email access to health care workers. Parents may also get personal webpages that UCSF physicians update on a daily basis. The electronic information pipeline can also serve to give parents access to reliable general information about the disease process, as well as information they will need to transition to home care. "These customized educational programs have been shown to increase patient satisfaction," he says.

The other significant element for parents will be forums that allow parents to form social networks with other parents with kids who are being treated at UCSF. "We want to provide the tools for parent blogs and forums where they can create virtual communities of people with like interests," Sun says.

These resources and more would be available to referring physicians. Bedside charting and information from many machines and monitors in the NICU would be accessible, giving physicians a meaningful way to follow their patients after they send them to UCSF, and enabling them to continue to participate in their care, Sun says.

Such comprehensive electronic data storage also has the potential to vastly accelerate clinical research. "Right now, the process of correlating clinical information with outcomes data on a particular subset of patients is extremely time-consuming, costly and tedious," Sun says. "Ultimately, we will have all that information online in a form that makes it easy to sort through."

As to the uniqueness of such a system, Sun says, "Many of these ideas are not new in themselves, but no one has put them together in an integrated way."

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