Timeliness Toolkit for Expanding Newborn Screening Services

Section 1: Making the Case for Change: A Tip Sheet for NBS Programs

This resource is part of the Timeliness Toolkit for Expanding Newborn Screening Services. Explore the full Timeliness Toolkit for Expanding Newborn Screening Services.

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Summary

This tip sheet, developed in partnership with the Association of State and Territorial Health Officials (ASTHO), is intended for newborn screening (NBS) staff. It is meant to help the user develop and make the case for change or improvement to state and/or health department leadership. This tip sheet includes ASTHO state stories, ROI Tool, and a sample fact sheet. 

Tell A Story

Craft a compelling story to illustrate why newborn screening is a vital public health program in your state, and what challenges and barriers exist in the current system to help make the case for change. Use data to help tell the story and to support your proposed policy or initiative. Some sources of data to consider: transit times tracked by the lab, birth defects registries,  Medicaid, and early intervention services.

Research Laws and Regulations

Find out about the existing laws and regulations that guide newborn screening in your state. Determine whether the existing language in statute or codes/regulation give your agency/program/health official authority to implement changes without going through a formal rule-making or amendment process. This will also help you estimate a timeline for the change and who will be affected. With the approval of your agency, consult your office of government affairs or your attorney general when needed to obtain opinions.

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Learn from Other States

Find out how other states have improved their newborn screening processes and addressed similar challenges and barriers. Other states’ experiences provide a roadmap for change that can be very helpful for making your case. If your state would be the first to implement a certain policy or initiative, this could also be an opportunity for your state to be a leader.  See ASTHO's Fact Sheet and state stories for Arizona, Kentucky, and New Jersey

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Know the Costs and Benefits

Be mindful of your state’s political climate and fiscal needs and be prepared to discuss the cost of implementing your proposed policy or initiative. Determine whether the proposed change would create a burden on hospitals or providers and whether this is related to a cost issue or a resource/training/staffing issue. Investigate ways to solve these issues and whether or not there are cost benefits or returns on the investments. As with many public health prevention programs, newborn screening has been shown to reduce costs long term.

See ASTHO's ROI Tool to help estimate economic returns for public health agencies and CostIT, a WHO tool designed to record and analyze cost data. 

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Partnerships are Paramount 

Identify partners within your agency or other state entities or organizations who would support your proposed policy or initiative and work collaboratively with them to gain information and construct the case. Partners might include the state lab, NBS advisory committee, hospitals, hospital associations, maternal and child health advocates, parent and caregiver groups, and health care providers. Also consider nontraditional partners who you may be able to bring to the table when planning: including your office of government affairs, regulatory arms of your agency such as departments of licensure and certification, Medicaid, state committees, councils and task forces, and community partners and schools of public health as a resource.

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Follow-Up

Follow up with your leadership and with your partners to share progress or successes that have resulted from your project. They want to hear from you!