Every day, couriers sweep the state collecting tiny blood samples drawn from every newborn Iowan. The samples make their way to the State Hygienic Laboratory at the University of Iowa.
What happens next is a testament to the dedication of lab and clinic staff and the power of the information systems that support their work.
Iowa’s Newborn Screening program tests every Iowa infant—plus infants born in South Dakota, North Dakota, and Alaska—for more than 49 inherited diseases. It alerts physicians and families in time to seek lifesaving interventions.
“Iowa’s program dates back to 1965, when it screened for one condition,” says Travis Henry, research scientist and laboratory supervisor for the program.
“Today, Iowa is one of the few U.S. states to achieve and exceed federal guidelines for reporting time-critical diseases within five days of birth. We typically deliver results within 72 hours.”
Behind the scenes, homegrown systems handle newborn testing workflow, case management, and communication. They’ve made Iowa’s Hygienic Lab an essential partner for local health care providers and for public health laboratories beyond Iowa.
Integrating systems at home and abroad
Hygienic Lab staff have been building laboratory information systems in-house for more than 20 years, creating solutions that manage tests for everything from infectious diseases to environmental contaminants.
“We’ve gone down the road of vended solutions but have found it’s difficult for vendors to develop applications for businesses they’re not really involved in,” says Frank Delin, director of information and technology for the Hygienic Lab.
As a result, Iowa’s lab has become a key player in development of new systems being adopted by other U.S. states, as well as nations abroad.
A prime example: OpenELIS (short for enterprise laboratory information system), an open-source platform that integrates sample submission, processing, and communication for a full range of public health screening programs.
Labs from six states designed the framework for OpenELIS starting in 2002. Developers in Iowa, Kansas, and Minnesota built the system. Today it’s in use as far away as Vietnam.
The UI team is moving infant screening and short-term follow up into OpenELIS—it’s the last major Hygienic Lab program to adopt the platform. They’re also working with OneIT colleagues to create a responsive web interface for OpenELIS, which should prove especially valuable in environmental testing.
“Right now, staff doing water-quality testing in the field need to keep paper records,” Delin says. “Soon they’ll be able to enter data directly into OpenELIS using mobile devices.”
Helping doctors and families plan treatment
The team continues to expand electronic data exchange with Iowa hospitals for infant screening and other clinical programs. At present, about 40 percent of newborn screening requests arrive at the laboratory via HL7 electronic messaging, which provides opportunities for streamlined processing and follow up.
“When my first daughter was born in 2006, systems still relied on paper and the post office. We received screening results after two weeks,” Delin recalls. “When we had another daughter in 2016, results were available online in a few days.”
Timely information helps physicians and parents confirm results and, when necessary, plan treatment.
“Many of the conditions we target don’t show symptoms but can cause irreversible damage within days after birth,” says Henry, the program laboratory supervisor. “The sooner the lab can provide test results to our clinical follow-up team, the sooner they can consult with physicians, which results in improved outcomes for families.”