The first days of a newborn’s life can be critical. Screening through blood samples for dangerous genetic conditions within three days of birth is standard in all the states and the District of Columbia. Newborn testing is crucial because some of the genetic conditions are exacerbated if not treated immediately. Testing also helps give parents access to various state resources to help them deal with their child’s condition.
But what if the red tape from various layers of paper work can slow down the entire process and prevent babies from getting treatment in a timely manner? Surely, bureaucracy can slow down everything from receiving positive test results to getting approval to see a pediatric specialist.
In California, for example, parents get a color coded copy of the testing results so they can give the form to the doctor at the baby’s first visit. But sometimes more paperwork is required. “If the name of your baby’s doctor is not what we have on file, your current baby’s doctor will need to fax or send a written consent form signed by you to get the results,” according to the state Department of Public Health. “The form should be filled out legibly, in capital letters and in blue or black ink. There should be no staples, tape or paper clips and all info should be double checked before being submitted.”
Fax? Ink? What decade are health officials working in?
Thankfully, this area of healthcare is finally heading into the digital era. A move to electronic health records is streamlining newborn screening and getting babies with congenital defects the treatments they need more quickly, reducing the damage that these defects can cause and saving money, as well as making the babies’ lives better.
Newborn screening has been standard for decades. The first was phenylketonuria (PKU) in the 1960s. “Phenylketonuria, better known as PKU, was a disease that often left patients profoundly disabled and institutionalized for life,” reports Mark Johnson in the Milwaukee Journal Sentinel, which did an award-winning series of articles starting in 2013 on newborn screening. “Today PKU is caught early enough to allow most patients to experience a normal mental development and life span.”
Other tests, including sickle cell and HIV, have been added in the years since. The exact tests vary by state, with some states now testing for as many as 80 genetic conditions, and with new conditions being added all the time. While each condition is rare individually—one in 10,000, one in 300,000, or even rarer—collectively they mean that one in 800 babies suffers from at least one of them, Johnson writes. That’s a total of about 12,000 babies per year.
But the Milwaukee Journal Sentinel report found that, in many states, the blood samples weren’t being tested within that three-day period—something that would be more easily fixed if these records were digitized. The result was that some babies with defects were getting sick because their conditions weren’t being treated right away. “Only Iowa and Delaware, for example, had 99 percent of blood samples meet the three-day turnaround time recommend by federal guidelines,” reported Ellen Gabler. “In Texas, 15 percent of blood samples took five or more days to arrive at the state lab after they were collected.” Other states had even worse records.
Ironically, this was all happening against the backdrop of other medical records migrating to Electronic Health Record (EHR) systems that offered benefits such as reducing the number of errors and streamlining workflow. Consequently, a number of hospitals have responded to the Journal Sentinel pieces by migrating newborn screening to EHR as well.
Moving toward EHR is necessary for our youngest members of society. “Although most of the disorders are rare, they are usually serious,” explains the website Baby’s First Test, a nationwide clearinghouse of information about the test, established in 2008. “Some may be life threatening; others may slow down a baby’s physical development or cause intellectual disability or other problems if left untreated. None of the disorders can be cured. However, serious side effects can be lessened, and often completely prevented, if a special diet or other medical intervention is started early.”
It’s not the first time the subject has come up. A 2010 presentation at the Association of Public Health Laboratories Newborn Screening Symposium also called for better use of electronic records. “Generating an electronic order in the hospital will reduce the need to key in data from the filter paper card once it reaches the lab,” noted the presentation. “Transferring the keying to the hospital can also improve accuracy and eliminate work by using data already in the hospital information system. The information will be transferred more quickly and completely to the NBS lab.”
The state of Minnesota has made particular strides in this area, with 75 of its 89 hospitals adopting a system that pulls the newborn’s demographic information from an electronic health record, writes Mattie Quinn in Governing. “The next phase of the project is enabling test results to be sent directly to the health record.”
Another organization, Indiana University Health, is undergoing a similar effort, Quinn adds. “The university is currently focused on consolidating 31 workflow steps into 14,” she writes. Similarly, a Wisconsin hospital with a perfect on-time record chalked up its success to having a process set up and training to ensure that staffers were aware of the process.
Further efforts to improve the process include standardizing newborn testing on a nationwide basis, rather than having different programs in each state, and using computer-based systems to track data. “Wisconsin lab officials say their goal is to eventually develop a fully automated system so hospitals can track individual samples and results through a computer,” writes Gabler in the Milwaukee Journal Sentinel. “That is the type of system available in Iowa, which met the three-day turnaround time for 99 percent of samples in 2012.” The Iowa system also uses open-source software, making it low-cost and easy to implement.
It’s time to ditch the paper trail and use EHR so babies can live longer, happier, healthier lives.
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