Other MCH Data Capacity Efforts

Described below are additional epidemiological and data capacity activities that support timely MCH data and information systems, including Title V needs assessment and performance measure reporting.

Pregnancy Risk Assessment Monitoring System (PRAMS)

DMCHRA manages PRAMS, a critical source of data for Title V performance measure reporting, including objectives related to maternal mental health and substance use. Central to the 2020-2025 substance use prevention action plan is revising the PRAMS survey to improve the measurement of tobacco, marijuana, and alcohol use during pregnancy.

In FY19-20, MA added supplemental survey questions on perinatal substance use and maternal disabilities to PRAMS and conducted a call-back survey of mothers who report using substances in the perinatal period. While there previously were rich programmatic and administrative data available in MA, there were no population-based survey data on opioid use and misuse before, during, and shortly after pregnancy. Therefore, the addition of a set of opioid supplemental questions to the PRAMS survey allowed MA to assess maternal behaviors and experiences related to the use of opioids and to understand their effect on the health of the mother and infant. Data from the opioid call-back survey are being analyzed and will enhance state surveillance systems to better identify community needs and policy gaps. PRAMS data on maternal opioid use, reason for use, interactions with health care providers related to prescribing and counseling and need for and access to treatment services will inform opioid initiatives and programs focused on the MCH population in MA.

In FY21, MA PRAMS received CSTE funding to add supplemental COVID-19 questions to the survey. These data will help MDPH to understand women’s experiences and needs during pregnancy and postpartum related to COVID-19 and provide state-level data to examine racial/ethnic inequities among pregnant women due to the pandemic. MA PRAMS will also implement a Fatherhood/Second parent survey in FY24 to better understand pregnancy and birth experiences and behaviors among new fathers and second parents.

One of the challenges of conducting PRAMS is maintaining the required response rate. The overall weighted response rate was 61.2%, 59.6%, and 57.0% for 2019, 2020, and 2021 respectively. While MA PRAMS has consistently met or exceeded the CDC minimum response rate threshold (50% in 2020-2021), there are lower response rates among Black non-Hispanic and Hispanic birthing people. Through a memorandum of understanding, MDPH has used the WIC program as an alternative source to the birth certificate for updated contact information for new mothers. The birth certificate does not include a phone number for dads which will make reaching dads by phone more challenging for the Fatherhood/Second parent survey.

PRAMS & Pregnancy to Early Life Longitudinal Data System (PELL)

MA developed the PELL data system, which tracks MCH outcomes longitudinally. The core linkage consists of live birth certificates and fetal death reports, provided by vital statistics, and linked annually by SSDI to their corresponding birth and delivery inpatient hospital discharge records. PELL also incorporates non-delivery inpatient hospital discharges, emergency department (ED), observational stay and program participation and surveillance data. Data from Early Intervention (EI), birth defects, WIC, newborn hearing screening, and home visiting are among the data that have been or are in the process of being linked. SSDI completed the linkage of 2020 birth and case mix data for PELL and will link 2021 data over the summer. PELL linkage of birth certificate data to delivery hospital discharge records has a 99% linkage rate for instate resident births. One of the challenges of PELL is the lack of timely casemix data (hospital discharge, ED and observational stays) for annual linkages with the birth certificates. CHIA provides casemix data annually for the two prior fiscal years. For example, to link birth cohort 2020, MDPH received FY21 at the end of December 2022.

During FY2023, DMCHRA received grant funding through ASTHO to conduct a linkage of PRAMS and PELL as part of a learning community effort. DMCHRA achieved 100% linkage between PRAMS and PELL using a combination of birth certificate number, maternal first and last name, maternal date of birth, and zip code. DMCHRA participates in the learning collaborative with other states doing similar linkages and shares lessons learned. Analyses are planned to evaluate the validity of gestational diabetes and pregnancy-induced hypertension as reported on PRAMS as compared to PELL.

PELL & WIC Linkage

After many delays due to COVID-19 related staffing issues, DMCHRA relaunched the linkage of PELL data to WIC participation data for 2012-2019 births and are linking 2020 births. Data from WIC participation records are available for 2012-2022 for pregnant and postpartum people and children from birth through age four years. Linkage rates among infants ranged from 94-96% with the birth certificate, and 99% of birth certificate records are linked in PELL. We are continuing to analyze linked data to evaluate WIC participation and subsequent otitis media and asthma in infancy and childhood, failure to thrive, poor growth, and childhood anemia, other infant/childhood emergency department, observational stay, and hospital utilization. We also are evaluating women’s health outcomes including gestational diabetes and outcome of pregnancy, interconception care, contraception, and inter-pregnancy interval.

Evaluation of MA Home Visiting Programs

MDPH collaborated with the Tufts Interdisciplinary Evaluation Research (TIER) team on a quasi-experimental evaluation of home visiting programs spanning the continuum of home visiting services in MA, including the evidence-based home visiting models Healthy Families America and Parents as Teachers, as well as Welcome Family, a universal one-time postpartum home visiting program, and the EI Parenting Partnerships Program, a home-grown multidisciplinary team-based home visiting program. The evaluation used linked secondary data from home visiting program management information systems; electronic birth and death certificates, fetal death reports, and data on hospital discharges, ED visits and observational stays within the PELL Data System, APCD healthcare claims data, and EI program data. These linked data were used to examine short- and longer-term impacts of home visiting programs on maternal and infant health and development outcomes and timeliness of linkages to EI services. Findings from these evaluations highlighted the effectiveness of Welcome Family and EIPP in facilitating timely connection of families with Early Intervention when needed. The evaluation team published two peer-reviewed articles describing the results of the Welcome Family and EIPP evaluations. 

Public Health Data Warehouse

The PHD, described in the Overview of the State, provides access to linked, multi-year data from across state government to enable analysis of health priorities and trends. Following an initial focus on opiate overdoses, the MDPH Commissioner identified MCH as the next priority for study to generate actionable information to help address inequities in MCH outcomes. The PHD team identified key questions related to maternal morbidity and mortality, preterm birth and infant mortality, and adolescent health and wellness. Data linkage and analyses are underway. A data brief on SMM was released in July 2023.

Like PELL, PHD data are not timely as they are provided on CHIA’s fiscal calendar as described above. Another challenge is that PHD linkages are done by CHIA and have not produced linkage rates that are as high as the PELL linkages. APCD claims are used as the spine for the PHD linkage, but data can be missing from insurance providers who did not participate in the claims data upload. This was made more complicated by a 2016 lawsuit that resulted in 10.3% of insurance providers foregoing data submission to the system from that point onwards.

Neonatal Abstinence Syndrome Surveillance

In 2020, the CBDRP’s Birth Defects Monitoring Program (BDMP) began piloting the inclusion of NAS as a reportable condition to its existing active, population-based surveillance system. BDMP medical record abstractors collect individual-level data from medical records on birthing person-infant dyads with NAS including maternal demographics, maternal medication history, infant symptoms, maternal and infant toxicology screens, infant treatment, information on plan of safe care, and information on to whom the infant was discharged. A key feature of the system is its ability to quickly add questions to adapt and collect data needed by MDPH programs; for example, questions were recently added around breastfeeding and housing stability. The BDMP NAS Surveillance System (NSS) provides accurate, reliable, and timely estimates and trends of the incidence of NAS. These data can inform optimal care, improve associated health outcomes, identify inequities, help develop tailored plans for mothers and infants, assess the immediate and potential long-term needs of infants with NAS and their parents, and ensure proper allocation of resources.

COVID-19 Surveillance

MDPH is conducting COVID-19 pregnancy surveillance through the Surveillance for Emerging Threats to Pregnant People and Infants Network (SET-NET), a surveillance system to rapidly identify the impact of emerging health threats to pregnant people and their infants. Infectious disease case surveillance data on women of reproductive age with lab confirmed SARS-CoV-2 infection are linked to birth and fetal death certificates to identify pregnant persons with COVID-19. Medical record abstractors collect data on the pregnant person and their infant (through 6 months of age) to better understand the effects of COVID-19 on this population. This effort leverages the Birth Defects Monitoring Program and its collaboration with the Bureau of Infectious Diseases and Laboratory Sciences, building upon previous work to enhance the system to monitor outcomes for pregnant women with Zika infection. The MA SET-NET team will be wrapping up surveillance for COVID-19 during pregnancy after completion of medical record abstraction for 2020-2021 infections and will be supporting data linkage and medical record abstraction for surveillance of hepatitis C virus infections in pregnancy.

For more information about SET-NET, refer to the Maternal/Women’s Health domain narrative.

COVID-19 Vaccination Uptake among Pregnant People

CBDRP has linked birth certificate data to COVID-19 vaccination data from the Massachusetts Immunization Information System (MIIS). Through this linkage, staff were able to examine COVID-19 vaccination uptake among pregnant and recently postpartum people and found that this population was vaccinated against COVID-19 at a much lower rate (51% of those who delivered in October 2022) than the general population (92% of total MA population as of October 2022). They also found differences in uptake by race/ethnicity among those who delivered between May 2021-October 2022, with Hispanic (27%), American Indian/Alaska Native (28%), and Black (30%) pregnant people receiving vaccination during pregnancy at much lower rates than White (48%) and Asian (55%) pregnant people. In addition to providing estimates for broad race/ethnicity categories, data were disaggregated into more granular racial/ethnic subgroups to make within group comparisons and reveal the heterogeneity within these broad groupings. These data were disseminated through several presentations with groups internal and external to MDPH, and a slide deck with the data and tailored information for healthcare providers was posted on mass.gov.

Community Evaluator Project

As part of the CDC COVID-19 health disparities grant, Title V is playing a key role in improving the use of data to assess the needs of groups disproportionately affected by COVID-19. Under the leadership of Title V staff, MDPH and TIER recruited, trained and supported a cadre of Community Evaluators (CEs) – people who are active in their communities and have experience with organizing or advocacy efforts – to assist in primary data collection and ensure community members are an active part of the evaluation process. During FY22, CEs led four Cohort 1 projects:

1. Lawrence Telehealth Kiosk: CEs conducted surveys to evaluate the implementation of a telehealth kiosk in the Lawrence Public Library designed to create a safe, confidential, and accessible space for Lawrence residents to access health and social services.
2. Pediatric COVID-19 Vaccination: CEs conducted focus groups with parents/caregivers to identify barriers and facilitators to COVID-19 vaccination among children ages 0-4 years.
3. Pregnancy COVID-19 Vaccination: CEs conducted mixed methods data collection with people who were pregnant during the pandemic.
4. Experiences of Frontline Workers: CEs conducted interviews with restaurant workers and interviews and focus groups with childcare workers to learn about their experiences during the pandemic. 

CEs completed data analysis and presented their findings and recommendations to project team and MDPH leadership at a Cohort 1 Closing Event in May 2023. TIER and the CEs are currently working on a summary report to present findings and recommendations from the Cohort 1 projects. 

Five additional projects were selected for Cohort 2 projects: Adolescent Mental Health, Breastfeeding Support, Cancer Survivorship, Health and Disability, and Moving Data into Action. Recruitment is underway for CEs to work on Cohort 2 projects, and the projects will begin in Summer 2023. For more information about the Community Evaluator project, refer to the Maternal/Women’s Health domain narrative.

Racial Equity Data Road Map

Over the past few years, MDPH has focused on using data as a tool to eliminate structural racism. Following a need identified in BFHN and BCHAP for greater capacity to collect and use data to promote racial equity, a cross-departmental workgroup developed the Racial Equity Data Road Map, which was released in 2020. The Road Map is a collection of guiding questions, tools and resources that offers a suggested methodology for using data to address racial and ethnic inequities in service delivery and health outcomes. The team that developed the Road Map is now focusing on supporting its use by MDPH programs and will incorporate feedback from users of the Road Map and other stakeholders into future revisions. In addition, the Association of State and Territorial Health Officials (ASTHO), with funding from CDC, is leading a learning community to support four state teams to use the Road Map in their racial equity work. For more information about the Racial Equity Data Road Map, refer to the Crosscutting domain narrative.