A Framework for Birth Defects Surveillance Program Referral to Service Activities
Birth Defects Surveillance Programs (BDSP) collect robust data related to children born with birth defects and utilize the data to describe the epidemiology of *birth defects and identify health disparities, identify causes of birth defects, and support connecting families to services that optimize health and wellbeing. AMCHP partnered with CDC and the National Birth Defects Prevention Network to develop the resources below to help BDSPs focus on connecting families to care as an important data-to-action activity.
Having agencies use birth defects data to link patients with appropriate services is a critical data use that has immediate and direct impact on the lives of those affected.
Resources
These resources are intended to assist and equip Birth Defects Surveillance Programs to initiate conversations and partnerships by:
- Developing an understanding of the partners within their local services landscape
- Identifying where their efforts best fit into the existing structures
- Considering how their activities might impact Social Determinants of Health
- Ensuring families are actively included throughout the process
Agencies Checklist
A Checklist of agencies and organizations, accompanied by individual “Agency Cards” containing additional information about each partner and guiding prompts.
Activities Checklist
A Checklist that identifies Core and Enhanced Referral to Service activities accompanied by “Activity Cards” containing grounding in Social Determinants of Health and suggested steps in engaging with each activity.
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Links to submitted BDSP programmatic resources
| We’d love to highlight your program’s referrals practices on our page! |  |
Submit your BDSPs referrals resources for us to link to or post on our landing page. |
Reach out to us:
CCC@amchp.org
The ultimate value of any public health surveillance program lies in the ways in which the data collected are used to improve the health of the public.
A note on terminology
Referral to services may hold several different meanings across the maternal and child health landscape, so for purposes of the resources on this page, we want to establish a few common working definitions.
“Birth Defect” is used throughout these resources as a term to describe a group of medical, anatomical, and/or biological variation that a child is born with. Other terms that are often utilized include Congenital Anomalies, Congenital Defects, and Birth Variations/Differences.
“Services” can include any and all kinds of clinical, public health, or other support programs and measures that are geared towards protecting and improving the lives of children born with birth defects and their families. Examples provided in the NBDPN Surveillance Guidelines (Section 1.4.5 Referral to Services) include: developmental screening and evaluation, public health programs, early intervention programs, financial assistance, parenting classes, medical services, recreational programs, and family support groups.
“Referrals” can include data exchange or collaboration between BDSPs and service providers, providing information to healthcare providers or families, or directly connecting families to care.
Thus “Referral to Services” are defined as any activity related to using birth defects surveillance data to improve equitable access to healthcare, education, and support, including financial, developmental, family, and other services for children with birth defects and their families.
Acknowledgements and Disclaimer
This project is supported by the Centers for Disease Control & Prevention of the US Department of Health & Human Services (HHS) as part of a financial assistance award totaling $500,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the US Government.
References
Farel AM, Meyer RE, Hicken M, Edmonds LD. Registry to referral: using birth defects registries to refer infants and toddlers for early intervention services. Birth Defects Research (Part A). 2003;67:647-650.