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State of Public Health

Applying Transparency and Quality Measurement to Improve Newborn Screening

Lessons Learned From Arizona's Transit Time Project

Martz, Mark P. PhD; Humble, Will MPH; Nabor, Celia MPA; Waddell, Victor PhD

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Journal of Public Health Management and Practice: March/April 2015 - Volume 21 - Issue 2 - p 217-219
doi: 10.1097/PHH.0000000000000226
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In Brief

You get what you inspect, not what you expect.” That simple but powerful principle from the American Management Association is and has always been a cornerstone of public health management and practice. Dr Snow1 applied the principle as he tracked cholera in London. And, according to Dr William Foege,2 former Centers for Disease Control and Prevention Director, in his book House on Fire: The Fight to Eradicate Smallpox, the principles of measurement and inspection were key ingredients in setting up the evaluation tools that made the smallpox eradication mission successful in India. Together, these principles guide public health practice as we develop intervention strategies to improve public health while demonstrating a positive return on investment in the public and private sectors.

With so many moving parts, spinning plates, and budgetary challenges, public health practitioners sometimes fail to inspect critical parts of our system. That is what happened to Arizona in 2013. Throughout 2012-2013, Arizona's newborn screening program was facing a number of financial challenges brought about by increasing reagent costs, a call for resources to replace aging tandem mass spectrometers, staff turnover, and stakeholders urging us to increase the number of disorders we test for in our newborn screening panel. Collectively, each of these factors placed additional stress on a program that was operating near capacity. Arizona's newborn screening program had found itself in the midst of a perfect storm.

In an effort to navigate the program through rough seas all the while working to keep the lights on, management focused efforts on getting authority to increase testing fees. The thinking here was that if more resources were available to address the myriad of problems confronting the program, fair winds and following seas would eventually result. However, faced with pressures coming from multiple directions, our program failed to inspect the time it took hospitals to get their newborn screening cards to our Arizona State Public Health Laboratory. Turns out, Arizona wasn't the only state whose newborn screening program was treading in deep water.

In Deadly Delays, published in the Milwaukee Journal Sentinel on November 16, 2013, author Ellen Gabler found that in 2012, “at least 160,000 blood samples from newborn babies arrived late at labs across the country.”3(p18A) Among her more detailed findings, Gabler uncovered substantial gaps in the time it took for newborns to be screened and then for tests to be transferred to state laboratories where they could undergo testing. This observation was seen in Arizona as, “17% of all newborn screening samples arriv[ed] at the state lab five or more days after collection in 2012.”3(p19A) In addition, her report revealed that even after testing was complete, further delays in reporting results back to practitioners in order to initiate treatment were commonplace—placing newborns in yet deeper levels of crisis and, in some cases, contributing to their preventable deaths.

At ASTHO's Winter Meeting in December 2013, state health officials discussed the causes of these delays and committed to making dramatic improvements in their respective state public health systems.4

Nine months later, at the ASTHO Annual Meeting in September 2014, ASTHO President Terry Cline presented the Presidential Meritorious Service Award to Ms Gabler, because her reporting had shed light on a critical issue and resulted in life-saving improvements in newborn screening practices.5 In Arizona, Gabler's work revealed the state's inability to administer newborn screening programs that were efficient, effective, transparent, and accountable. Understanding what states did to respond to this discovery thus became a key to organizing our screening systems in ways that protect the health and well-being of newborns moving forward. Arizona provides a good example of what is possible once a call for action is declared.

In the fall of 2013 shortly after the publication of Deadly Delays, Will Humble, Director of the Arizona Department of Health Services, brought his team together to announce he was placing the newborn screening program as an agency top priority. He then appointed a task force to create a program that would be directly responsible for developing, implementing, and evaluating Arizona's newborn screening program. What came to be known as the Transit Time Project, a goal was set that by July 1, 2014, 95% of newborn screening bloodspots (initial screens) would be received at the Arizona State Public Health Laboratory within 3 days of collection.

In order for the Transit Time Project to achieve its goal, a series of critical steps needed to be taken. First, the team embarked on an assessment of all Arizona hospitals' newborn screening policy and procedures as well as an evaluation of Arizona's specimen transport network to determine where gaps and redundancies may exist within the state. Second, in partnership with the Arizona Perinatal Trust, the Arizona Hospital and Healthcare Association, and the March of Dimes, calendar year 2013 baseline performance data were released to hospital chief executive officers, directors of nursing, and directors of laboratories informing them of where they were as individual hospitals and how they fared as compared with their peers. Next, statewide outreach and education efforts were undertaken to bring hospital staff up to speed on changes that were taking place and ways in which the Transit Time Project could provide them with guidance and technical assistance in the months and years following.

Next steps involved building a statewide courier system capable of delivering specimens to the state laboratory in a timely fashion. The transport system needed to run 6 days a week having routine morning pickup, and same- or next business–day delivery. State laboratory staff were also called upon to extend their work hours, including covering Saturdays and holidays observed by the state, to ensure that tests were received properly. Finally, state regulations specific to the operation of Arizona's health care institutions were aligned with state newborn screening rules.

As a result of the collaborative work taken on by stakeholders representing public health, hospitals, interest groups, and private actors, in 5 months, 99% of initial newborn screening bloodspot specimens collected at birth hospitals were received at the Arizona State Public Health Laboratory within 1 day of collection.

As we are all aware, in public health, things do not stay the same for very long. To maintain policies and procedures that remain efficient and effective, measures need to be taken to continuously monitor the outcomes of policy interventions. This was definitely the case for the newborn screening program in Arizona and likely for others operating across the country.

Transparency and accountability. These 2 words represent gatekeepers when determining whether or not a public health program improves, stays the same, or fails. In Deadly Delays, we learned that because there was not a great deal of either present among state screening programs, great harm was being done. Attention was being focused on only parts of the system, leaving one of the most critical segments of the process invisible to a large majority of those working most intimately within our nation's screening programs. Arizona and other states provide examples of the benefits transparency brings to not only informing but also organically creating accountability among stakeholders. For example, as part of the Transit Time Project, transit time for hospitals across the state is posted on the Arizona Department of Health Services–Office of Newborn Screening Web site so that hospitals can gauge their individual performance as well as compare themselves with their peers. Posting monthly performance measures creates an inherent motivation for hospitals to work diligently to improve their transit times, thus making them not only accountable to themselves but also to one another. In a competitive market, no one will survive if he or she is last and those who finish first tend to receive the greater share of the pie. In other words, “You get what you inspect, not what you expect.”

Newborn screening programs save lives. Since the creation of the first test to screen for phenylketonuria, screening has detected countless genetic and physiological conditions in newborns that, if treated early and appropriately, can enable children to live full and healthy lives. While the journey to develop processes to ensure programs achieve their priceless goal has been unsteady at times, using transparency and accountability as guides to navigate the unpredictable waters of public health policy ensures all that if we occasionally steer ourselves off course we can be guided safely back to shore.

REFERENCES

1. Rosenburg CE. The Cholera Year. Chicago, IL: University of Chicago Press; 1962.
2. Foege WH. House on Fire: The Fight to Eradicate Smallpox. Los Angeles, CA: University of California Press; 2011.
3. Gabler E. Deadly Delays: Delays at hospitals across the country undermine newborn screening programs, putting babies at risk of disability and death. Milwaukee Journal Sentinel. November 16, 2013:18A–19A.
4. Association of State and Territorial Health Officials Winter Meeting; December 3–5, 2013; Chapel Hill, North Carolina.
5. Association of State and Territorial Health Officials Annual Meeting; September 9–11, 2014; Santa Ana Pueblo, New Mexico.
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