2024 Public Health Laboratory Annual Report 
Data and Quality Unit Brings the Facts to Newborn Screening Program

Data and Quality, affectionately known as “DQ” or “the ice cream team,” is a new unit in the Newborn Screening Program. Its goal is to use the data points the program has collected to improve the program’s operations and help other organizations.

The Data and Quality team brings together the people who work with data: epidemiologists, a data analyst, a quality specialist, an interoperability specialist, and a business steward. The unit consists of four major areas:

Data

The data analysts of the Data and Quality team have created a dozen or more internal data dashboards to help each unit of the Newborn Screening program track its daily work, such as:

• Outcomes of cases.
• Testing metrics, such as the accuracy of the tests. 
• General population information, such as birth weights.

The Data and Quality team is also reaching out to submitters to learn more about families who refuse to allow their newborns to be screened. It is the Newborn Screening Program’s goal to screen every baby born in Minnesota for congenital diseases that are otherwise undetectable. The percentage of families who refuse screening is small but has grown in the last few years. The team is also communicating with other states’ newborn screening programs to investigate the issue.

Another project involves analyzing the geographical and social determinants at work in families who do not complete the recommended follow-up after receiving positive screening results. After a screen reveals a significant risk that a newborn has a condition, the Newborn Screening Program’s Follow-Up Unit encourages the newborn’s physician to schedule diagnostic tests and treatments. The data analyst is reviewing whether lower rates of follow-up correlate with geographic locations, socioeconomic conditions, access to transportation, access to health facilities, and other factors.

Quality

Quality assurance is key to any organization, especially a public health laboratory. Testing must be accurate and precise, and results must be sent to the correct parties as quickly as possible. The Quality Team ensures that the Newborn Screening Program fulfills these standards and others detailed by Clinical Laboratory Improvement Amendments of 1988 (CLIA) regulations, which govern our lab.

The Quality Team distributes comprehensive reports to birth providers – the hospitals and other health professionals who deliver babies and submit samples to us -- across Minnesota, every six months. These reports open lines of communication, show submitters if they are sending the right information within adequate time frames, provide population and statewide data, and compare their work to that of other birth providers. Since the Data and Quality Team was established, the reports have been expanded and improved. Reports are now being sent to midwives along with those involved in newborn screening at hospitals.

Interoperability

Our interoperability specialist works to establish electronic communication with birth providers. Just a few years ago, all information was exchanged on paper forms. Someone in a hospital would write down around 30 data elements and mail the paper to the Newborn Screening Program, where our employees would enter the information into our data base. It was a time-consuming system with long delays and many errors.

A new technology of electronic HL7 messaging is allowing our program to instead get information directly from medical records. It also allows for rapid correction of any errors. Our program can update medical records with test results, rather than sending letters that birth providers must enter into their systems.

Business steward

The Data and Quality Unit’s business steward manages data and record coordination, an especially important aspect of state government. The steward handles data sharing internally and externally, takes inventory of data, and keeps the program in line with retention and sharing policies, along with other duties.

As a whole, the Data and Quality Unit has already provided invaluable support to the Minnesota Newborn Screening Program. With it, the program can better pursue its ultimate goal of uncovering every treatable medical condition affecting Minnesota newborns.

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