How we reported on the newborn screening series

The Montana Center for Investigative Reporting analyzed information on the timeliness of nearly 50,000 newborn screening samples to produce the first-ever look at delays in newborn screening from Montana’s hospitals.

This is an example of a newborn screening card from DPHHS that is used in hospitals to collect blood to be sent to the lab for newborn screening testing.

This is an example of a newborn screening card from DPHHS that is used in hospitals to collect blood to be sent to the lab for newborn screening testing.

To determine whether newborn blood samples were being sent to the labs in a timely manner, MTCIR submitted a public records request asking for the data from the Montana Department of Public Health and Human Services. After ten long months and a long, hard fight, DPHHS finally agreed to release the data for Montana only.

For data regarding blood samples sent to the Wisconsin state lab, which DPHHS has a contract with, the Department would release no data, citing it did in fact track the results but for some reason did not enter it into the Department’s computer system.

The data MTCIR received is presented by year, naming each hospital that had at least 20 births in a calendar year. Since DPHHS agreed to release hospital names so that a facility’s performance would be subject to public scrutiny, MTCIR agreed to pay for the costs of processing the data.

For the remainder of hospitals with less than 20 births in a calendar year, only summary statistics were provided and no hospitals were named. These remaining hospital’s newborn blood sample data was placed in a category called “All Other, Fewer Than 20 Births/Year.”

MTCIR initially requested a breakdown of timeliness for every blood sample in the state naming each hospital, but instead decided narrow down the parameters in negotiations with DPHHS to secure the release of as much useful data as possible.

Courier Route Map

This is a Medical Logistic Solutions courier route map for the state of Montana.

A blood sample is supposed to be collected from a newborn baby between 24 and 48 hours after birth, then sent to the lab within 24 hours for testing. The law requires hospitals to use either a courier service or the mail.

The vast majority of Montana’s hospitals use Medical Logistic Solutions, a courier service that holds the current contract with the state of Montana. But some hospitals use a third-party courier service instead. If sending samples by mail, hospitals are required to send the samples via no less than First Class Mail, or its equivalent, and are not supposed to hold on to samples so they can be sent together later, a process called “batching.”

We also asked for data detailing samples that were found to be “unsatisfactory,” meaning they were unable to be tested because of quality issues associated with the collection process, pick-up and delivery, or that other important information was missing. But DPHHS would not release this data.

Unsatisfactory samples can cause significant delays in newborn screening testing because babies have to be brought back to a hospital or doctor’s office for a repeat screening, in other words, a second test. This can take several more days for a sample to reach the lab, putting a baby at great risk of death, permanent disability, or a lifetime of costly medical care if a test result were to come back positive for a deadly disorder.

In addition to analyzing tens-of-thousands of newborn screening records, MTCIR took an in-depth look at the state and federal laws around newborn screening, blood sample collection procedures at hospitals, lab schedules and requirements, and contractual agreements the state of Montana has with courier services and other state labs.

Montana’s Public Health Laboratory is only capable of performing six out of the total 29 newborn screening tests that Montana’s newborn screening program tests for. DPHHS has a contract with the Wisconsin State Newborn Screening Laboratory to perform the remaining 23 tests.

Fellow journalists and IRE members from the Milwaukee Journal Sentinel conducted a nationwide investigation into newborn screening in 2012 and found that thousands of hospitals were sending large numbers of newborn blood samples late to labs. That year, DPHHS refused to release any data whatsoever to the Journal Sentinel that included hospital names.

MTCIR decided to tackle the issue head-on and fight for release of the data being withheld because its release was a matter of compelling public interest. Although the data has now been released for the last four complete calendar years, 2011 – 2014, greater transparency and accountability is desperately needed. You can help make this happen by urging your lawmakers and state health officials to be completely open about what’s going on in Montana’s hospitals.

After the Journal Sentinel’s Deadly Delays investigation, Congress passed the Newborn Screening Saves Lives Reauthorization Act, strengthening a 2008 measure that provides $19.9 million for the country’s state-run newborn screening programs. After overhauling its programs, some state health departments with the worst performances turned things around and even began posting hospital’s newborn screening on-time performances right on their own websites, taking government transparency to a new level.

If you think this life-saving program should be more transparent and accountable as we do, here is a directory of key state and federal officials involved with newborn screening issues in Montana, and how they can be reached.

This newborn screening investigation was made possible with support from the Fund for Investigative Journalism.

If you’re a parent with a child who has had a particularly good, or bad experience, with newborn screening in Montana, we would love to hear your story. Please fill out our contact form, or send us an email to: news@mtcir.org.

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