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. For example, findings from the opioid supplement will inform the Interagency Task Force on Newborns with NAS and Substance Exposed Newborns, whose charge is to assess existing services and programs in the Commonwealth for mothers and newborns with NAS, identify service gaps, and formulate a cross-system action plan for collecting data, developing outcome goals, and addressing service and support gaps in the Commonwealth.   

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. Through CDC COVID-19 disparities grant funding, MA PRAMS will also implement a PRAMS for Dads survey to better understand pregnancy and birth experiences and behaviors among new fathers.   

MDPH worked with CDC to improve the timeliness of PRAMS data and received weighted PRAMS 2018 data in September 2019 and 2019 data in December 2020, which was unprecedented. The SSDI Director also worked with the Registry of Vital Records and Statistics to establish data use agreements to improve access to real time birth and death records to support Title V programing and monitoring. DMCHRA staff now have access to preliminary 2022 data, which are the most up-to-date data available.

One of the challenges of conducting PRAMS is maintaining the required response rate. The overall weighted response rate was 61.9%, 62.4%, and 61.2% for 2017, 2018, and 2019 respectively. While MA PRAMS has met the CDC minimum response rate threshold (62% in 2017-2018), 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 PRAMS for Dads survey.

Pregnancy to Early Life Longitudinal Data System (PELL) & All Payer Claims Database

MA developed the Pregnancy to Early Life Longitudinal (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.  

During FY19, DMCHRA/SSDI linked PELL with the MA All Payer Claims Database (APCD), which contains medical, dental, and pharmacy claims for all residents, starting with 2010–2016 claims data with the goal of linking annually through 2021. Staff analyzed data among children born in MA from 1/1/13–12/31/16 by linking clinical assisted reproductive technology (ART) data from the Society for ART Clinic Outcome Reporting System (SART CORS) with the MA PELL system and the APCD. Analysis was limited to children who had one or more APCD claim during their first year of life and who never had Medicaid. We compared the relative risk of having one or more ICD-9 or ICD-10 code for a respiratory disorder in women designated as: 1) fertile (without ART, other infertility treatments, or indicators of infertility), 2) infertile (with  an ICD-9 or ICD-10 code for infertility in APCD prior to delivery), or ART-treated (linked to SART CORS). Unfortunately, direct linkages of PELL with APCD have been discontinued due to new regulations that do not allow the Center for Health Information and Analysis (CHIA) to release APCD data for linkage purposes.

MDPH collaborated with Tufts Interdisciplinary Evaluation Research (TIER) 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.

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 2018, MDPH received FY18 at the end of December 2019.

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. The SSDI Director is co-leading this effort with the Office of Population Health.

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 mother-baby 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. The BDMP NAS Surveillance System (NSS) can provide 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 Mothers and Babies 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.

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 (40% of those who delivered in October 2021) than the general population (78% of total MA population as of October 2021). They also found differences in uptake by race/ethnicity among those who delivered between May 2021-October 2021, with Black (16%), Hispanic (17%), and American Indian/Alaska Native (20%) pregnant people receiving vaccination during pregnancy at much lower rates than White (42%) and Asian (46%) pregnant people. Data were broken down by race/ethnicity and other sociodemographic characteristics including age, preferred spoken language, nativity status, education level, insurance type, and adequacy of prenatal care. 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 a new CDC COVID-19 disparities grant, Title V will play a key role in improving the use of qualitative data to assess the needs of groups disproportionately affected by COVID-19. Under the leadership of Title V staff, MDPH and TIER will recruit, train and support a cadre of Community Evaluators (CEs) – people who are active in their communities and have experience with organizing or advocacy efforts – to assist in qualitative data collection and ensure community members are an active part of the research process. CEs will develop and pilot interview/focus group protocols, recruit community participants, co-lead focus groups, and interpret findings. The CEs will also advise on other MDPH projects to identify information needs, define or refine questions, ensure data collection methods are equitable and capture the voices of underrepresented populations, and ensure reports and other outputs are useful for a range of audiences. Having a trained cadre of CEs at the ready will enable MDPH to:

• Participate in rapid turn-around focus groups or key informant interviews to provide qualitative data to inform COVID-related work across MDPH.
• Pilot new surveys and provide recommendations for cultural competency and accessibility.
• Elevate key concerns and prioritized needs from the community.
• Inform the drafting of population specific data products like dashboards, health equity reports, State Health Assessment, and the State Health Improvement Plan.
• Identify needs for conducting population specific community engagement to share results with the populations in question.

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 for action to promote racial equity in MDPH-funded programs and initiatives, 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 Road Map guides its users to authentically engage the community, frame data in the broader historical and structural contexts that impact health, communicate that inequities are unfair, unjust and preventable, and design solutions that address the root causes of these issues. 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.