The Milwaukee Journal Sentinel analyzed information from nearly 3 million newborn screening tests to produce this first-ever look at delays in newborn screening from hospitals across the country.
To examine whether blood samples taken from newborns are being sent to labs in a timely manner, the Journal Sentinel requested data from every U.S. state and the District of Columbia. The information has been presented by year, although it was released by states in various ways - day, month, quarter and year - and analyzed by the Journal Sentinel.
Reporters sought data that would show how long it took for newborns’ blood samples to arrive at laboratories from individual hospitals. When a baby’s blood is collected, that date is recorded and sent with the sample. When the sample arrives at the lab for screening, that date is recorded, and all the information is stored electronically in a database.
Reporters initially requested a breakdown of the timeliness for every test conducted in each state. Newborn screening labs and public health departments in some states provided this information. Others said releasing it would violate patient privacy.
Names of children were not requested, nor were outcomes of any tests.
If a state refused to provide data for each test, the Journal Sentinel then requested summary statistics. That information lists each hospital in a state and shows the number of samples received at a lab during different time periods, as well as the total number of samples sent by a hospital. The breakdown of days varies by state because newborn screening programs track samples differently. One state might track the number of samples that take four or more days to arrive at a lab, while another might use seven days as a threshold.
Blood is supposed to be collected from a baby between 24 and 48 hours after birth, then sent to the lab within 24 hours.
Often, a courier service or overnight delivery is used.
In several cases, the Journal Sentinel was denied access to records and had to appeal to state health secretaries, who then told newborn screening labs and health departments to release the records.
Newborn screening labs and public health departments in about half the country refused to provide any information that could be linked to a specific hospital. Officials often said providing the information could violate patient privacy. A few states released statewide totals only.
The Journal Sentinel agreed to pay for the costs of processing data if a state would release hospital names, but not when hospital names were going to be kept hidden.
The Journal Sentinel also asked for data detailing samples that were deemed “unsatisfactory,” meaning they were unable to be tested because of quality issues or important clerical information was missing. Unsatisfactory samples cause delays in newborn screening because babies must be taken back to hospitals or doctor’s offices to have blood taken for the second test.
In addition to the nationwide data analysis, reporters compiled an in-depth look at each newborn screening program throughout the country. In some states, samples must be transported overnight, while others allow use of the U.S. mail. Lab schedules and requirements for how quickly samples must be sent vary among states, too. The information was gathered from phone and email interviews, states’ newborn screening websites, and state statutes and regulations.