Establishing and Sustaining Newborn Screening Connections
By Chenelle Norman , MPH , manager , Newborn Screening Quality Improvement
One aim of APHL is to improve engagement and strengthen relationships with all newborn screening ( NBS ) programs . The Newborn Screening Technical assistance and Evaluation Program ( NewSTEPs ) conducts regular outreach to state and territorial NBS programs in order to systematically understand their needs and offer support around data , reporting and other NBS requests . The strategic outreach by “ connectors ” to NBS programs has proven exceptionally valuable to identifying program needs and sustaining meaningful relationships , particularly at a time where staying connected is more important than ever .
The NBS Connector Model
The NBS Connector Model is a customized approach to relationship management . It ensures that each NBS program has an identified point-of-contact on the NewSTEPs team who is intimately knowledgeable of a program ’ s unique needs and challenges and can provide tailored support as needed . Programs may receive additional coaching and / or support depending on their level of engagement in NBS continuous quality improvement ( CQI ) activities .
Dependent upon a program ’ s needs , connectors routinely reach out to their assigned NBS program to communicate information about existing resources , upcoming trainings , and engage in discussions around opportunities and challenges .
Takeaways from Initial Connector Outreach
Around the time that NewSTEPs planned to launch connector outreach , the COVID-19 pandemic hit . Rather than postpone activities , it was decided that it was still a good time to reach out to
members . Initial outreach was conducted between June and July 2020 , and it proved to be an incredibly valuable opportunity .
Information gathered from many NBS programs included :
• Details regarding reagent / supply shortages
• Progress on efforts to add new disorders including Spinal muscular atrophy ( SMA ), X-linked adrenoleukodystrophy ( X-ALD ), Pompe , and Mucopolysaccharidosis I ( MPS I )
• Modifications to screening algorithms
• Staffing updates and / or challenges
• Status of data submission to the APHL NewSTEPs Data Repository .
Information shared with programs included :
• Current funding opportunities
• Upcoming trainings and application deadlines
• Upcoming national meetings and webinars
• National updates and trends .
Higher level of CQI training wherein a subset of NBS programs are funded to engage in advanced CQI activities and receive structured coaching on a monthly basis .
Mid-level of support wherein programs are ready to engage actively in NBS CQI activities without direct funding and receive additional technical support specifically from NewSTEPs QI staff on an as needed basis .
All newborn screening programs are paired with a NewSTEPs staff member to identify challenges and potential solutions on an ongoing basis .
In addition to gathering and sharing information , the initial connector outreach has helped to inform webinar topics , dashboard creation for tracking shared challenges and updates , and identify opportunities for collaboration across different programs .
Sustaining the Connector Model
NewSTEPs looks forward to continuing quarterly connector outreach to assigned NBS programs . Moving forward and in the spirit of continuous improvement , staff may recommend and implement modifications to the connector calls based on lessons learned and feedback provided by NBS programs . In addition , in the near future , measures will be designed to better assess outcomes such as program engagement and data accuracy and / or submission to further demonstrate the impact of connector outreach . n