麻豆果冻传媒

Unique Use of Electronic Medical Records Helps Physicians at Packard Children's Select Treatment for Rare Disease

For Release: November 02, 2011

STANFORD, Calif. For the first time, aggregate patient data from electronic medical records has been used to help make a challenging, real-time decision in the care of a patient with a rare disease. A team at Lucile Packard Children鈥檚 Hospital Stanford queried the hospital鈥檚 records to help weigh the pros and cons of a risky, but potentially beneficial, treatment that has not yet been evaluated in the medical literature.

Using a data-storage system designed to support clinical research, the team decided the treatment was appropriate, and the patient recovered from her medical crisis and is now doing well. 鈥淭his is the future of the electronic medical record and, I hope, the future of a lot of clinical research,鈥 said Scott Sutherland, MD, who is a pediatric nephrologist at Packard Children鈥檚 and the senior author of a perspective paper describing the case. The paper will be published online Nov. 2 in the New England Journal of Medicine.

鈥淥ur story is unique,鈥 said Christopher Longhurst, MD, who is a co-author of the paper and an architect of Packard Children鈥檚 electronic medical record system. Few hospitals have research capabilities built into their electronic medical records, he said, and although the concept of using the records to answer clinical questions in real time has been proposed before, the idea has not previously been put into practice. The advance was possible because, unlike most doctors, the faculty physicians at Packard Children鈥檚 can access large sets of de-identified patient data from the hospital鈥檚 electronic medical record via a computer tool developed for clinical research.

The patient in this case was a 13-year-old girl admitted to the hospital with severe inflammation of the kidneys and pancreas that had developed as a complication of lupus. Her condition is rare in children, and no clinical trials or other medical literature addressed the best course of care for her unique situation. The medical team, led by rheumatologist Jennifer Frankovich, MD, realized the girl was at risk for blood clots that could cause organ failure or death. However, the anticoagulant drugs that would prevent blood clots would also increase the risk of bleeding from invasive medical procedures, such as the kidney biopsy the girl needed.

Frankovich, who is also an instructor of pediatric rheumatology at the Stanford University School of Medicine, consulted her colleagues about what to do. They said anticoagulation probably wasn鈥檛 needed, but had little evidence to back up their advice. That worried Frankovich, who couldn鈥檛 shake her anxiety about the patient. 鈥淪he was sick, and I felt like in the next three days we could make her a lot sicker or a lot better,鈥 said Frankovich, the first author of the paper.

Faced with such sparse information, she turned to the hospital鈥檚 aggregate electronic medical record system. She examined de-identified patient data from the 98 pediatric lupus patients who received care at Packard Children鈥檚 between October 2004 and July 2009. Ten patients had developed blood clots. With a quick statistical analysis, Frankovich saw that the risk for blood clots was much higher in lupus patients with kidney and pancreatic inflammation. Extracting this information from paper charts would have taken months; with the electronic tools, Frankovich completed the job in four hours, and gave the patient an anticoagulant drug within 24 hours of her hospital admission. The analysis is important because it let the team quickly pick up on a pattern that a single physician would never have been able to see otherwise.

鈥淧hysician recall has the potential to be biased,鈥 said Sutherland, who is also a clinical assistant professor of pediatric nephrology at the School of Medicine. 鈥淎nd with the myriad data currently available within the electronic medical record, sometimes it鈥檚 hard to pick out what鈥檚 important. This type of chart review is much more accurate and efficient.鈥 At most hospitals, electronic medical records are still used only like paper charts: as repositories for doctors鈥 orders and nurses鈥 notes about the patient鈥檚 condition. This case shows that the records can and should become much more powerful, said Longhurst, who is chief medical information officer at Packard Children鈥檚 and a clinical assistant professor of pediatrics in systems medicine at Stanford.

鈥淭he electronic medical record should not just be a place to document data,鈥 Longhurst said. 鈥淲e actually should be learning from every patient we鈥檙e seeing, creating real-time knowledge bases.鈥 The ability to learn from electronic records is getting faster, the team said. Thanks to advances in the Packard Children鈥檚 electronic medical record and Stanford鈥檚 accompanying research tools, the search that took Frankovich four hours when this patient was seen in early 2010 would take about an hour today. Frankovich added, 鈥淚 expect in the future that you鈥檒l be able to look at aggregate patient data during rounds, so you can make more-informed patient care decisions right there.鈥

Author

Erin Digitale
(650) 724-9175
digitale@stanford.edu

Reena Mukamal

About 麻豆果冻传媒 Children's Health

麻豆果冻传媒 Children鈥檚 Health, with听Lucile Packard Children鈥檚 Hospital Stanford听at its center, is the Bay Area鈥檚 largest health care system exclusively dedicated to children and expectant mothers. Our network of care includes more than 65听locations听across Northern California and more than 85 locations in the U.S. Western region.听Along with Stanford Health Care and the Stanford School of Medicine, we are part of听, an ecosystem harnessing the potential of biomedicine through collaborative research, education, and clinical care to improve health outcomes around the world. We are a nonprofit organization committed to supporting the community through meaningful outreach programs and services and providing necessary medical care to families, regardless of their ability to pay. Discover more at听stanfordchildrens.org.