III.E.2.b.iii.b.  State Systems Development Initiative (SSDI)

Arkansas States Systems Development Initiative (SSDI) focuses on providing MCH programs with access to relevant timely data and information to monitor health indicators and to develop innovative programs and policies directed toward improving the health of mother and child population.  Arkansas SSDI efforts complement the Title V MCH data capacity and analysis. Activities support, enhance, and expand State Title V MCH data capacity to allow for informed decision-making and resource allocation that support effective, efficient, and quality programming for women, infants, adolescents, and those Children with Special Health Care Needs (CSHCN).  As the FY 2023 MCH Block Grant application along with FY 2021 Annual Report was completed, the SSDI linkage datasets were utilized for several measures.  The FY 2023 MCH Block Grant application required an updated needs assessment which was conducted and completed in July 2022.  The SSDI has assisted the MCH epidemiologist at the Family Health Branch (FHB) with responses to these requests in a very timely manner with up-to-date information.  SSDI’s contribution to MCH projects are numerous.  During the FY 2022 (12/01/2021 – 11/30/2022) reporting period, the Arkansas SSDI team collaboration with internal and external partners has accomplished the following activities.  

• The Health Statistics Branch (HSB) partners with the University of Arkansas for Medical Sciences (UAMS) to provide technical support and assistance with the Mother’s project.  The Hospital Discharge Data Section (HDDS) of the HSB provides Statistical Analysis System (SAS) datasets each year to aid in evaluating care and outcomes of maternity patients and their newborns.  Accomplishments pertaining to this project include the collaboration between the SSDI staff and HDDS staff to ensure an accurate amount of time is allotted to collect the needed linkage data from the respective databases.  These databases include hospital discharge data, PRAMS, fetal, birth, and death certificates.  There are five datasets requested within this project that require intense and detailed SAS programming.  Once completed, all analysts meet to discuss and compare the quality and accuracy of the results.  The overall success of the Mother’s project could only be achieved through excellent teamwork and partnership.

• SSDI staff have conducted linkages between Medicaid data to birth, infant death, death, and hospital discharge data files for the High-Risk Pregnancy Program (HRPP) Project (formerly called the Antenatal and Neonatal Guidelines for Education and Learning Systems, or ANGELS).  To reduce infant mortality and improve patient care for clients covered by the Arkansas Medicaid program, the directors of the Maternal Fetal Medicine and Neonatology Divisions of the UAMS - with financial support from the Medicaid Program - began the HRPP Program partnership.  The HRPP Program partnership brings maternal fetal medicine specialty care via telemedicine to high-risk women living in remote areas to ensure that every woman in Arkansas at risk of having a complicated pregnancy receives the best perinatal care possible.  The linked datasets are used to evaluate the pregnancy outcomes of the HRPP Project. This evaluation is one part of the evidence-based medical approach the Arkansas Department of Health (ADH), the Arkansas Department of Human Services (ADHS), and UAMS are doing to improve maternal and child health in the state.  Articles related to data linkages have been published in various scientific journals.

• One example of achieving SSDI goals was to make MCH stakeholders aware of available linked data sets.  A data sharing agreement was signed between the Arkansas Department of Health (ADH) and the Arkansas Department of Human Services (ADHS), Division of Medical Services in December 2021.  The purpose of the agreement is to assess the effectiveness of a variety of interventions intended to improve the birth outcomes of infants born to Medicaid or the Children’s Health Insurance Program (CHIP) beneficiaries, and to assess the health care utilization and outcomes of children enrolled in Medicaid or CHIP as infants.  SSDI staff receive three datasets annually (Category 1: Infants enrolled in Medicaid/CHIP; mother not enrolled, Category 2: Infants enrolled in Medicaid/CHIP; mother also enrolled, and Category 3: Mothers enrolled in Medicaid/CHIP; infant(s) not enrolled), through “MoveIT” Departments’ secured file servers.  SSDI staff has already matched infants in Categories 1 and 2 to birth certificate data per the HRSA SSDI Award Performance Goals.  SSDI staff match Category 3 mothers enrolled in Medicaid/CHIP to infant’s birth certificates and provide ADHS with certain fields from the birth certificates for all three categories of infants.  CY2019 - CY2020 Medicaid/CHIP versus birth certificate records linkage were completed in time and uploaded to ADHS secured servers.  The birth linkage outcomes on Medicaid/CHIP had been reported at a December 2021 advisory panel meeting and stakeholder meeting at the end of March 2022.  The ADHS Secretary leads the meeting, which includes several other secretaries, ADH representatives, and legislative representatives.

• SSDI staff have worked with the FHB’s Newborn Screening (NBS) Program to monitor and improve the quality of newborn screenings throughout the state. Newborn screening for inborn conditions has been mandatory in Arkansas since Act 192 of 1967 stipulated screening of all newborns for phenylketonuria.  Since that time, the number of conditions screened for has grown substantially.  The program oversees follow-ups on disorders screened using the blood spot card in addition to two point of care tests, hearing screen and critical congenital heart disease, for 31 disorders counting the two POC tests.  Ninety-eight percent (98%) of the approximately 35,070 babies born in Arkansas in 2021 were screened for these genetic disorders.  SSDI provided two NBS-Birth records linkage by county/health clinic bi-annually; one creates a dataset that includes information on infants with rejected samples and the other creates a data set that excludes infants with rejected samples used by the Family Health Branch staff to evaluate needs for those counties have lower percentage of newborn screen.  In addition, the race/ethnicity breakdown of the infants screened in CY2021 was provided to the MCH Epidemiologist for the 2023 Title V MCH Block Grant Application/2021 Annual Report: Newborn Screening (Form 4).  The Newborn Screening Program is in the Child and Adolescent Health Section at Family Health Branch of the Arkansas Department of Health. 

• The Public Health NBS Lab Manager, SSDI staff, and Newborn Screening Manager work diligently and continue to monitor monthly timeliness of data at three points during the process: date of birth to specimen collection, collection to receipt in the ADH Public Health Lab, and receipt to reporting of test results.  Time is measured in hours and a goal of less than 168 hours (7 days) from birth to reporting of test results was set.  The 2021 report indicated the average was 205.6 hours. There were several factors that contributed to the increase in the number of hours from receipt to reporting.  Arkansas experienced a week of inclement winter weather that closed the agency and shutdown the statewide courier service.  The agency has since put together a continuity of services plan for future weather and other emergency events.  During the months of May, October, November, and December the laboratory experienced various equipment issues that prevented the timely reporting of some test results.  A big factor in the later months was the implementation of new mass spectrometry instruments that coincided with the addition of a new disorder to the screening panel.  The instruments were installed in the lab in November and, due to numerous problems, resulted in a longer than usual verification for use.  As a result, the vendor worked with ADH NBS lab and follow-up staff to coordinate the shipping of specimens to their lab in Pennsylvania to complete the testing for fatty, organic, and amino acid disorders as well as the new disorder, X-linked adrenoleukodystrophy (X-ALD).  A protocol was also implemented to report critical results in a timely manner to the nursing staff for continuity of care.  This factor plays an important part by assisting the NBS Nurse educator in scheduling ZOOM/Virtual conference calls with the birthing hospitals that have the strongest need to meet the < 168 hours goal.  Each birthing facility receives a quarterly Hospital Timeliness Report to identify the number of specimens collected and received by the NBS lab within 48 hours of collection.  Any facility that does not meet the goal of 80% of specimens reaching the lab within 48 hours is contacted to discuss potential issues related to timely specimen submission.  At the end of 2021, a yearly comparison report of all birthing facilities had an average of 85.3%.  The program provides support to partner hospitals with virtual education opportunities and technical assistance to ensure effective collection to receipt in the lab for processing.

• The HSB has a data sharing agreement in place with the ADH COVID-19 Pregnant Women and Infants Registry, which conducts surveillance of pregnant women infected with SARS-CoV-2 during pregnancy and their infants.  SSDI staff perform linkages between registry data and birth, death, and fetal death data to assess pregnancy outcome and to obtain needed information for medical chart abstraction such as the providers of prenatal and pediatric care and hospital where birth or death occurred.  The 2020 COVID-19 data of pregnant women was linked to 2020 and 2021 birth certificate data, death data and fetal death data.  Approximately 96% of the covid data of pregnant women was linked to the birth, 0.8 % were linked to the fetal death, 0.8% of the babies whose mothers have a COVID were linked to the death, and 0.08% of mothers were linked to death.  As multiple years of linked data sets become available, the analyst can conduct mother-baby linked longitudinal surveillance to better understand the impact of such exposures on pregnant women and their babies.

• Arkansas PRAMS successfully implemented the eleven question COVID-19 supplement from January 2021 to March 2021.  The project was implemented with three PRAMS batches as required.  Arkansas PRAMS convened its steering committee meeting on June 7, 2022, and provided them with a quick fact sheet with information on the program and some of the findings from the COVID-19 supplement that was implemented in 2021.  In addition, the office of Oral Health provides workshops throughout the state and used PRAMS information on Mom’s dental health before and during pregnancy.  Vital Statistics-PRAMS-BRFSS-Hospital Discharge Data System data were used for presentations, grants, reports, and other documents by partners (such as University of Arkansas for Medical Sciences, Arkansas Department of Human Service, Arkansas Children’s Hospital, Arkansas Center for Health Improvement, legislators, Safe Sleep, Office of Health Equity, March of Dimes, Infant Mortality Action Group, etc.) and Family Health Branch staff. 

• The HSB continues its agreement to provide annual, and more frequently as requested, access to individual-level birth and death data sets to support the Title V MCH Block Grant application, progress report, and some program activities such as efforts to decrease infant mortality.  Upon request, aggregate data for hospital discharge, fetal death, PRAMS, and BRFSS data can also be provided.  The HSB established a Memorandum of Agreement (MOA) with the Family Health Branch’s Arkansas Maternal Mortality Review Committee (AMMRC) to identify and collect demographic, medical, and social history on maternal deaths in the state.  AMMRC holds quarterly Committee meetings with a multidisciplinary panel of experts to discuss cases and make decisions and recommendations for preventing maternal deaths.  AMMRC released its second annual report to the Arkansas Legislature in late 2021, which presented findings and recommendations based on 2018 maternal deaths.  AMMRC is currently working on its third annual report and an accompanying fact sheet which will showcase reviews of 2019 maternal deaths. 

• The SSDI staff has extensive experience in linking many independent databases that will be very useful to the Arkansas Maternal and Child Health projects.  To date, the SSDI effort in Arkansas has been able to complete file linkage of birth certificates to the following databases to support MCH Block Grant programs:

With the assistance of SSDI staff, the various linked data sets are analyzed to identify trends in maternal and child health, assess low birth weight, preterm births, infant mortality, prenatal care, unintended pregnancy, and other MCH issues.  The findings are applied to program planning, performance monitoring and program evaluations.  As multiple years of linked datasets become available, the ability to address maternal and child health programmatic and policy issues will be significantly enhanced.