Status Report on Protecting Our Infants Act Implementation Plan. Recommendations Addressing Data and Surveillance Changes

02/07/2019

Recommendations addressed by the following agencies:

24. Standardize terminology and promote a unified approach to data collection and reporting in order to accurately quantify prenatal substance exposure and identify risk and protective factors amenable to preventive efforts.(Data & Surveillance, Child)

  1. AHRQ, CDC, HRSA, IHS, SAMHSA

25. Collect substance- and diagnosis-specific data about prenatal substance use in order to develop adequate treatment capacity.(Data & Surveillance, Maternal)

  1. CDC, CMS, HRSA, IHS, NIDA, OASH/OWH, SAMHSA

26. Establish clear definitions of NAS vs. NOWS and standardize the use of ICD codes in order to collect more meaningful and actionable data on the impact of prenatal substance exposure on infants and children.(Data & Surveillance, Child)

  1. CDC, HRSA, IHS

27. Collect substance and diagnosis specific data about prenatal substance use in order to identify unmet service and care-coordination needs and any disparities in access.(Data & Surveillance, Maternal)

  1. CMS, HRSA, SAMHSA

28. Collect data on the outcomes of substance exposed children who are removed from their families versus those remaining with a mother receiving supportive interventions.(Data & Surveillance, Child)

  1. ACF/Children's Bureau, CDC, HRSA, NICHD, NIDA

Examples of Agency activities to address recommendations:

Recommendation Agency Action Funding Milestones/Status
24. Standardize terminology and promote a unified approach to data collection and reporting in order to accurately quantify prenatal substance exposure and identify risk and protective factors amenable to preventive efforts.(Data & Surveillance, Child) AHRQ
  • Develops plan to use Health Cost and Utilization Project data to identify national or selected state-level trends in NAS diagnoses and prenatal exposures via maternal substance use.
  • Work with HRSA and CDC to develop a standardized definition of NAS using ICD-10 codes. Evaluate the sensitivity and specificity of ICD-9-CM and ICD-10-CM codes for NAS specifications using the data from the Healthcare Cost Utilization Project.
  • Document trends in NAS at national, regional, state and county level.
  • Work with CEDC to examine hospitalizations for NAS-related birth defects.
  • Examine factors associated with higher and lower county-level rates of NAS.
  • Funded
  • Ongoing
CDC (move to next CDC)
  • Funded and provided TA to several state PQCs that are standardizing identification and data collection of NAS and validating ICD-10 NAS codes with hospital record data.
  • Funded
  • Ongoing
  • Provides TA through MCH epidemiologists assigned to state health departments evaluating sensitivity and specificity of ICD-9 and ICD-10 NAS codes and working with CSTE to standardize NAS definitions and surveillance.
  • Funded
  • Ongoing
  • The Treating for Two initiative tracks trends in prescription opioid use among pregnant and reproductive-age women to monitor the opioid epidemic and identify effective primary and secondary prevention strategies
  • Unfunded
  • Ongoing
  • CDC is working with funded PQCs and CSTE to recommend a standardized surveillance definition for NAS.
  • Funded
  • Ongoing
  • Aims to work with AHRQ and HRSA on analysis of NAS identified with ICD-10 codes.
  • Funding TBD
  • Proposed, contingent on funding
  • Proposes leveraging the infrastructure of existing population-based birth defects surveillance programs to monitor the occurrence of NAS and any related birth defects.
  • Funding TBD
  • Proposed, contingent on funding
  • Proposes leveraging the public health surveillance infrastructure of the US Zika Pregnancy and Infant Registry to monitor maternal, neonatal, and pediatric outcomes of infants following sustained prenatal exposure to opioids.
  • Funding TBD
  • Proposed, contingent on funding
  • To help local health departments implement and/or improve surveillance of prenatal opioid exposure, CDC is adapting the Zika Local Health Department (LHD) Initiative and has placed a locally-hired contractual field assignee in Allegheny County, PA to build health department surge capacity where needed most. Learning from this model, we are extending the model via the OMNI Learning Community in up to 5 communities in 2019 and 2020 (See Recommendation #1).
  • Contract funding
  • Ongoing, 2016-2019; proposed, 2019-2020
  • CDC is working with ACF to improve the health and developmental outcomes of children with prenatal substance exposures in the child welfare system by promoting appropriate identification, referrals, interventions and education. Working towards this objective will also 1) reduce the risk of repeated cycles of abuse/neglect and 2) build an infrastructure for monitoring the magnitude and resource needs for this population.
  • Funded co-agreement
  • 2014-2019
  • Working with AAP on efforts to integrate assessment of prenatal alcohol exposure as routine primary pediatric practice.
  • Funded
  • Ongoing
HRSA (move to next HRSA)
  • Through the Fetal, Infant, Child Death Review Program, provides data collection, training, and TA to the more than 1,300 Child Death Review teams in the United States. Data provide descriptive information on child deaths related to suicide, serious mental illness, and opioid use.
  • Funded
  • FY18
IHS (move to next IHS)
  • Standardizes terminology and conceptualization to NOWS from the previously universal terminology of NAS.
  • Funded
  • Ongoing
  • Develops NOWS guideline including documentation recommendations and uniformed approach to infant assessments.
  • Funded
  • 12 months
  • Plans to adopt, distribute, and train on the IHS Best Practice Guidelines for NOWS.
  • Funded
  • 12 months
  • Considers applicability of holistic approaches and best practice recommendations included in NOWS guideline.
  • TBD
  • 12 months
  • Considers development of a survey to collect data from IHS Labor and Delivery Hospitals to improve care provision in these obstetrics units.
  • TBD
  • 2 years
SAMHSA (move to next SAMHSA)
  • Consults with subject matter experts in CDC, CMS, and other HHS agencies in consolidating validated measures/metrics to capture prenatal substance exposure.
  • Funded
  • Ongoing
Recommendation Agency Action Funding Milestones/Status
25. Collect substance- and diagnosis-specific data about prenatal substance use in order to develop adequate treatment capacity.(Data & Surveillance, Maternal) CDC (move to next CDC)
  • Leading the Treating for Two initiative to identify the safest treatment options for the management of common conditions before and during pregnancy and to improve the availability and quality of data to help inform clinical management decisions for pregnant and reproductive aged women and their healthcare providers. Treating for Two also conducts ongoing research and surveillance of medications commonly used to manage health conditions during pregnancy and associated adverse outcomes including structural birth defects.
  • Unfunded
  • Ongoing
  • Provided funds for a PRAMS supplement that will allow selected states to collect data on maternal substance use.
  • Funded
  • PRAMS supplement to be completed 2018
  • Provided funds in collaboration with the March of Dimes to conduct pilot projects on NAS leveraging the infrastructure of existing birth defects surveillance programs to better understand the incidence, severity, and long-term developmental and educational outcomes associated with NAS.
  • Funded co-agreement
  • NAS pilot projects to be completed June 2018
  • In addition to the pilot projects designed to better understand NAS and inform the development of national NAS surveillance, CDC proposes to leverage the public health surveillance infrastructure of the US Zika Pregnancy and Infant Registry and of existing birth defects surveillance programs to monitor maternal, neonatal, and pediatric outcomes of infants following sustained prenatal exposure to opioids. Using this two-pronged approach to surveillance, CDC aims to understand the full scope of the opioid epidemic's impact on pregnant women and babies, in order to better address this growing public health concern and improve long-term health of mothers and babies.
  • Funding TBD
  • Proposed, contingent on funding
CMS (move to next CMS)
  • Through the Medicaid IAP, CMS is supporting states to assess the size and characteristics of NAS and opioid-related maternity care within the state's Medicaid program, including conducting data analytics on key population, utilization and expenditure patterns associated with NAS. The aim of the NAS analytics under IAP is to help states understand where treatment occurs, what type of OUD maternity care and NAS treatment are utilized, and costs to Medicaid, in order to better inform data-driven strategies and support development of targeted interventions.
  • Funded
  • Ongoing
  • As a part of a multi-pronged strategy to combat the opioid crisis, some CMMI models being considered for potential development explore opportunities to collect substance- and diagnosis-specific data about prenatal substance use in order to develop adequate treatment capacity.
  • Potentially funded through Section 3021 (of the Affordable Care Act) Appropriation
  • 10-12 months
HRSA(move to next HRSA)
  • Provides all states with Title V funds that may be used in data collection activities.
  • Funded
  • Ongoing
  • Annually compiles and makes available national and state-level data on the proportion of infants born with NAS in partnership with CDC and AHRQ.
  • Funded
  • Ongoing
IHS (move to next IHS)
  • Supports efforts to fix the IHS electronic medical record lack of sophistication to capture substance of use from a national perspective. There are SNOMED diagnostic barriers to capturing these data. IHS policy recommendations implemented at the local level should support this data collection.
  • Funding TBD
  • 12 months
NIDA (move to next NIDA)
  • Funded research to objectively determine which pregnant women should be administered buprenorphine.
  • Funded
  • Ongoing
  • Plans to grow and develop research in this area.
  • Funding TBD
  • TBD
OASH (move to next OASH)
OWH (move to next OWH)
  • A potential element of the OASH/OWH and HRSA Office of Women's Health initiative to produce a care coordination model for women impacted by opioids who receive healthcare services via HRSA-administered programs.
  • Funded via IAA in FY18, FY19 funding TBD.
  • FY18-FY20
SAMHSA (move to next SAMHSA)
  • Will conduct an evaluation of the PPW state pilot program that will identify unmet needs and barriers to meeting those needs, as well as strategies for meeting the needs.
  • Contract funding
  • 2017-2020
Recommendation Agency Action Funding Milestones/Status
26. Establish clear definitions of NAS vs. NOWS and standardize the use of ICD codes in order to collect more meaningful and actionable data on the impact of prenatal substance exposure on infants and children. (Data & Surveillance, Child) CDC (move to next CDC)
  • Provided funds and TA to several state PQCs that are engaged in standardizing identification and data collection of NAS and validating ICD-10 NAS codes with hospital record data.
  • Funded
  • Ongoing
  • Provides TA through MCH Epidemiologists assigned to state health departments who are assisting with this work, evaluating sensitivity and specificity of ICD-9 and ICD-10 NAS codes
  • Funded
  • Ongoing
  • Working with CSTE to standardize NAS definitions and surveillance.
  • Unfunded
  • Ongoing
  • The Treating for Two initiative is tracking trends in prescription opioid use among pregnant and reproductive aged women to monitor the opioid epidemic and improve primary and secondary prevention efforts.
  • Unfunded
  • Ongoing
  • Hopes to work with AHRQ and HRSA on analysis of NAS identified with ICD-10 codes.
  • TBD
  • TBD
  • Proposes to leverage the public health surveillance infrastructure of a surveillance network (US Zika Pregnancy and Infant Registry) and existing birth defects surveillance systems to monitor maternal, neonatal, and pediatric outcomes of infants following sustained prenatal exposure to opioids. Using this two-pronged approach to surveillance, CDC aims to understand the full scope of the opioid epidemic's impact on pregnant women and babies, in order to better address this growing public health concern and improve long-term health of mothers and babies.
  • Funding TB
  • Proposed, contingent on funding
  • To help local health departments implement and/or improve surveillance of prenatal opioid exposure, CDC is adapting the Zika Local Health Department (LHD) Initiative and has placed a locally-hired contractual field assignee in Allegheny County to build health department capacity where needed most. Learning from this model, we are extending the model via the OMNI Learning Community in up to 5 communities in 2019 and 2020 (See Recommendation #1).
  • Contract funding
  • Ongoing 2016-2019; proposed 2019-2020
  • Through an interagency agreement, CDC is working with the ACF to improve the health and developmental outcomes of children with prenatal substance exposures in the child welfare system by promoting appropriate identification, referrals, interventions and education. Working towards this objective will also 1) reduce the risk of repeated cycles of abuse/neglect and 2) build an infrastructure for monitoring the magnitude and resource needs for this population.
  • Interagency agreement
  • 2016-2018
  • CDC is working with AAP on efforts to integrate assessment of prenatal alcohol exposure as routine primary pediatric practice.
  • Funded co-agreement
  • 2014-2018
HRSA (move to next HRSA)
  • Provides Title V funds to all states that may be used to standardize care for infants with NAS.
  • Funded
  • Ongoing
IHS (move to next IHS)
  • Standardizes terminology and conceptualization of NOWS from the previously universal terminology of NAS.
  • Funded
  • Ongoing
  • Develops NOWS guideline to include documentation recommendations and uniformed approach to infant assessments.
  • Funded
  • 12 months
  • Plans to adopt, distribute, and train on the IHS Best Practice Guidelines for NOWS.
  • Funded
  • 12 months
  • Considers applicability of holistic approaches and best practice recommendations included in NOWS guideline.
  • Funding TBD
  • 12 months
  • Considers development of a survey to collect data from IHS Labor and Delivery Hospitals to improve care provision in these OB units.
  • Funding TBD
  • 2 years
Recommendation Agency Action Funding Milestones/Status
27. Collect substance and diagnosis specific data about prenatal substance use in order to identify unmet service and care-coordination needs and any disparities in access.(Data & Surveillance, Maternal) CMS (move to next CMS)
  • Through the Medicaid IAP, CMS is supporting states to assess the size and characteristics of NAS and opioid-related maternity care within the state's Medicaid program, including conducting data analytics on key population, utilization and expenditure patterns associated with NAS. The aim of the NAS analytics under IAP is to help states understand where treatment occurs, what type of OUD maternity care and NAS treatment are utilized, and costs to Medicaid, in order to better inform data-driven strategies and support development of targeted interventions.
  • Funded
  • Ongoing
  • As a part of a multi-pronged strategy to combat the opioid crisis, some CMMI models being considered for potential development explore opportunities to collect substance and diagnosis specific data about prenatal substance use in order to identify unmet service and care-coordination needs and any disparities in access.
  • Potentially funded through Section 3021 (of the Affordable Care Act) Appropriation
  • 10-12 months
HRSA (move to next HRSA)
  • Provides Title V funds to all states that may be used in data collection activities.
  • Funded
  • Ongoing
  • Annually compiles and makes available national and state-level data on the proportion of infants born with NAS in partnership with CDC and AHRQ.
  • Funded
  • Ongoing
SAMHSA (move to next SAMHSA)
  • Conducts an evaluation of the PPW state pilot program that will identify unmet needs and barriers to meeting those needs, as well as strategies for meeting the needs.
  • Funded
  • 2017-2020
Recommendation Agency Action Funding Milestones/Status
28. Collect data on the outcomes of substance exposed children who are removed from their families versus those remaining with a mother receiving supportive interventions. (Data & Surveillance, Child) ACF (move to next ACF)
Children's Bureau (move to next CB)
  • Sponsors the National Child Abuse and Neglect Data System, which collects data on substance-exposed infants, and the Adoption and Foster Care Analysis and Reporting System, which plans to collect information on whether "prenatal exposure" to alcohol or drugs contributes to the child being removed from the home.
  • Funded
  • Ongoing
  • To implement the CARA amendments to CAPTA, WRMA, Inc., the contractor for NCANDS convened a volunteer working group of nine states to discuss and make recommendations of how to report the required data via NCANDS. The Children's Bureau and ACF Policy staff approved the provided decisions of how to report these data to NCANDS. In May 2017, NCANDS Technical Bulletin #9 was released to all states to provide guidance on data collection and reporting to comply with the CARA amendments to CAPTA. During August 2017, WRMA Inc. held a webinar with a focus on the CARA-related fields and during one-on-one TA provided to states during the fall of 2017, answered any questions from states about the CARA-related fields. During early 2018, states received specific guidance, instructions, definitions and data quality checks on how to report each CARA-related fields. States will begin reporting this data for FY18.
  • Contract funding
  • Ongoing
CDC (move to next CDC)
  • Provided funds in collaboration with the March of Dimes to IL, NM, and VT to leverage the infrastructure of existing birth defects surveillance programs to conduct active surveillance of infants with NAS over a 1-year period, link vital statistics and hospital discharge data to follow these infants with NAS through age 1, and collect information on outcomes, including data on removal of child from the home following prenatal substance exposure.
  • Funded co-agreement
  • NAS pilot project to be completed June 2018
HRSA (move to next HRSA)
  • Provides Title V funds to all states that may be used in data collection activities.
  • Funded
  • Ongoing
  • HRSA annually compiles and makes available national and state-level data on the proportion of infants born with NAS in partnership with CDC and AHRQ.
  • Funded
  • Ongoing
NICHD (move to next NICHD)
NIDA move to next NIDA)
ECHO (move to next ECHO)
  • Conducts ACT NOW: Advancing Clinical Trials in NOWs initiative, NOT-DA-17-067, Notice of Interest in Advancing Research about the Effects of Opioids and Opioid Antagonists on the Fetal and Neonatal Brain Development, jointly issued by NIDA and NICHD requests applications on this topic.
  • Funding TBD
  • TBD