APHL's Scott Becker Explains How NewSTEPs 360 is Promoting Innovation in Newborn Screening
September 12, 2018 | ASTHO Staff
Newborn Screening Awareness Month takes place every September to remind new and expecting parents, healthcare professionals, and the public about the importance of newborn screening to test babies for certain diseases and conditions before the symptoms even appear. This includes blood testing, hearing screening, and pulse oximetry. Throughout the month, public health and newborn screening communities rally around the principle that all babies deserve a healthy start. Ahead of this year’s observance, Scott Becker, executive director of the Association of Public Health Laboratories (APHL), discusses initiatives and collaborations to help improve newborn screening, as well as the work ASTHO is doing to promote this vital work among state and territorial public health leaders.
Each year, newborn screening saves thousands of babies from disability or premature death. Newborn screening is the practice of testing newborns for upwards of 35 genetic and metabolic diseases, usually between 24 and 48 hours after birth. To help support and advance states’ newborn screening quality improvement initiatives, the Colorado School of Public Health, in collaboration with APHL, established NewSTEPs 360 in 2015, a HRSA-funded program to improve timeliness across the newborn screening system utilizing a continuous quality improvement (CQI) framework.
NewSTEPs 360 facilitates innovative CQI processes through a shared learning collaborative of 28 participating state and territorial programs working to identify and overcome barriers to timely newborn screening through technical and financial assistance. ASTHO has partnered with NewSTEPs 360 to help promote the message of improving timely newborn screening to state leadership.
ASTHO recently collaborated with NewSTEPs 360 to develop a web-based resource, the Timeliness Toolkit for Expanding Newborn Screening Services. The toolkit aims to help newborn screening advocates and stakeholders promote extended-hour courier and laboratory services in order to shorten the time between testing and treatment.
APHL Executive Director Scott Becker notes that the toolkit was published at an important five-year milestone juncture. In 2013, a Milwaukee Journal Sentinel special report highlighted extensive nationwide newborn screening specimen transit and processing delays. Since the report came out, many states have overhauled and significantly improved their newborn screening processes.
“I’m really proud of the fact that state public health agencies and labs have worked with hospitals and other newborn screening stakeholders to really step up and made changes,” Becker says. “That's really why we wanted to develop the toolkit: to provide resources to states that were along that continuum where they were making improvements. Because in public health, quality improvement is part of our fabric.”
The timeliness toolkit provides tips for telling a compelling story about newborn screening’s value and details approaches for navigating the laws and regulations governing newborn screening programs. The toolkit also provides examples on how states have accommodated extended weekend and holiday hours. As with the laws governing newborn screening programs, policies regarding extended hours may vary from state to state, so the toolkit offers checklists to help states decide when and how to extend their hours.
The toolkit suggests states work creatively and reach out to nontraditional partners to establish the resources needed to reach their newborn screening goals. According to Becker, “That's where state health officials come into play, because they can be pivotal in helping both to identify the resources but also to ensuring that the services that the public really deserve are being offered by their agencies.”
A key element of NewSTEPs 360 is the central data repository, developed through another HRSA funded program, NewSTEPs, to provide critical information to state newborn screening stakeholders. “We want to be that repository of quality information about newborn screening for state programs, for state policymakers, for parents, for advocates—really for the community,” Becker says. “What we want to be able to do is track over time quality improvements, but we also want to make sure that the most accurate information about state programs is put in one place.”
Becker has led APHL since 1997, and has witnessed firsthand how public health laboratories have adapted over the past two decades to meet the nation’s needs. “I've seen a tremendous shift in the landscape for public health labs, going from what I would call a traditional ‘vanilla’ public health lab doing a certain set of functions to now looking at the public health lab as a laboratory for innovation,” Becker says. He posits that the NewSTEPs repository could become a model for other public health laboratory-led databases that address public health challenges. “NewSTEPs is a great example of collecting information but then allowing the public and our members and state health officials to use that data,” Becker says.
Becker underscores that states’ recent newborn screening advances demonstrate the importance of recognizing and actively working to close public health gaps. “What's exciting about NewSTEPs 360, and about the [newborn screening] timeliness information, is that we're going from a point of where there was an identified need in our country, identified in the Milwaukee Journal Sentinel,” he says. “But we acted on it, and we're really turning the corner on it, and—through the use of the toolkit, through the data, through case studies, through stories—really trying to do everything we can to move our country forward and all the state newborn screening programs forward.”