Newborn screening seems like a small thing, but improving the system has had a big impact.

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CPHI partnered with key stakeholders throughout the U.S. to identify the challenges and related solutions in the newborn screening system. At each step, we considered how we could identify affected babies accurately and in a timely manner. We developed new procedures, coached program stakeholders, and developed toolkits to resolve the issues we identified.

Through our work, specimens are now collected earlier, arrive at the lab more quickly, and the results are sent to physicians sooner. Babies’ lives are saved. Through a network of continuous quality improvement activities, we have:

  • Coached newborn screening programs to identify their biggest challenges and subsequently identify activities to address them.
  • Helped programs to educate birthing centers on the appropriate processes for collecting and shipping newborn screening specimens.
  • Created the Timeliness Toolkit for Expanding NBS ServicesThe Operating Hours and Courier Toolkit, which provides fundamental resources for programs to decrease the time from collection of the specimen to receipt at the lab.
  • Created the Building Blocks Toolkit, which presents tools for the transfer of data through health information technology approaches.

We have also developed interactive visualizations that allow programs to make real-time decisions on programmatic activities. All of these tangible activities have stemmed from an intangible success of CPHI’s work: the community of practice that we are continuing to build in the newborn screening arena. The strength of our success comes from the power of bringing people together to work towards a common solution that saves chidrens’ lives.   Ready to start writing your own success story? Contact CI today. Other ideas for success stories:

  • HIT–reframe how the NBS community thinks about HIT solutions (Building Blocks toolkit would go here)
    • VA ETL
  • Continuous Quality Improvement-training; changing culture of quality; coaching; using data to make informed decisions.
    • Worked with Regional Genetic Networks to build capacity for quality improvement
    • NewSTEPs 360—A Continuous Quality Improvement project to improve timeliness in the newborn screening community.
  • Midwife work (relationships built with midwife community; buy-in to NBS, resources developed)
  • Metric Development (QI measures and standardizing case definitions
  • Data visualization
  • NBS Timeliness-timeliness toolkit, improving system for specimen transit (Beth Tarini timeliness simulator, modeling work), supported education
    • Convening pubic health NBS staff and CF clinicians to identify solutions to improve NBS; creating communities of practice; strengthened relationships