Building and Supporting Accessible, Timely and Linked MCH Data Systems

HRSA’s four SSDI program goals for the FY 2023-2027 project period are to: 1) Strengthen capacity to collect, analyze, and use reliable data for the Title V MCH Block Grant to assure data-driven programming; 2) Strengthen access to, and linkage of, key MCH datasets to inform MCH Block Grant programming and policy development, and assure and strengthen information exchange and data interoperability; 3) Enhance the development, integration, and tracking of health equity and social determinants of health (SDOH) metrics to inform Title V programming; and 4) Develop and enhance capacity for timely MCH data collection, analysis, reporting, and visualization to inform rapid state program and policy action related to emergencies and emerging issues/threats, such as COVID-19.

In the first project year of the new project period, CT SSDI has continued to develop, enhance, and expand state Title V MCH data capacity for its needs assessment and performance measure reporting for the Title V MCH Block Grant (MCHBG) program, as well as support MCH programs, initiatives, and policies statewide.

Connecticut has consistent annual and direct access to 7 of the 8 data sources identified in Form 12. Medicaid is the one data source for which access has been an ongoing challenge. One continuing challenge has been in obtaining Medicaid data files. For the past 11 years, Connecticut has not had access to linked birth-Medicaid data. In the past, the Connecticut Department of Social Services (DSS) had provided linked birth data to Medicaid status at the time of delivery; this linkage was completed by a DSS subcontractor. The last birth year for which data were provided was 2012 because DSS’s subcontractor was defunded. Marc Camardo, Connecticut Title V MCH Director and SSDI Project Director, worked with staff in the Community, Family Health and Prevention Section, Vital Records, and the DPH Legal Office during the previous SSDI Project Period to successfully execute a Memorandum of Understanding (MOU) with DSS, which also serves as the Inter-Agency Agreement required by the MCHBG. While this has enabled Connecticut to receive aggregate data for Form 6 for birth years 2013-2021, DSS did not agree to provide the DPH with the linked data set. Mr. Camardo and Jennifer Morin, SSDI Project Coordinator, initiated discussions with new partners at DSS and other DPH staff beginning in 2021 and have been meeting with them on a regular basis to discuss current limitations and solutions in order to execute a new MOU that would provide the fields necessary for linkage and meaningful analysis. They will continue working with the DSS partners in the upcoming project year to, hopefully, finalize a new MOU that would allow for data linkage once again, and to produce data that is mutually beneficial to DPH and DSS.

Despite some challenges, there were several significant successes in the past year that strengthened CT’s MCH data capacity and improved data quality through linkages that were achieved through the added capacity of our CDC MCH Epidemiology Assignee. She was able to complete several major linkage projects, including CT Longitudinal Linkage of Vital Events (CT-LLOVE), Severe maternal morbidity (SMM), and Birth Defects. Please see the Other MCH Data Capacity Efforts Section for more details.

Ongoing Title V Program Assessment, Monitoring and Reporting

CT’s existing data infrastructure is able to support all of the requirements of the MCHBG. The eight selected National Performance Measures (NPMs) report either Federally Available Data (FAD) or CT survey/surveillance data (i.e., BRFSS, PRAMS, and Vital Statistics). Data for the three State Performance Measures (SPMs) are provided by Vital Statistics and the CT School Health Survey’s Youth Behavior Component. The twelve Evidence-Based or Informed Strategy Measures (ESMs) report a variety of data sources as they are strategies and activities that are both practical and measurable.

In terms of analytic capacity, SSDI Project staff have been providing data support to the MCHBG for annual applications/reports, as well as needs assessments (NA), for well over a decade. SSDI staff will continue to collect and analyze data necessary for reporting to the MCHBG and conduct the next 5-year MCHBG NA in 2025. The SSDI Project Director led the past two NA processes and will serve as a key staff lead for the upcoming NA. The Project Coordinator and other SSDI staff have also been involved in the past NAs and will continue to provide support for the next NA. There are additional epidemiologists in the Community, Family Health, and Prevention Section (CFHPS) and other sections of DPH that will assist with the provision of data to support MCHBG reporting and the NA.

Pregnancy Risk Assessment Monitoring System (PRAMS)

The Connecticut SSDI project has had a longstanding commitment to supporting the implementation of the Pregnancy Risk Assessment Monitoring System (PRAMS) survey to expand and sustain state data capacity. The ongoing study of birth outcomes and associated risk factors has yielded a better understanding of the impact of maternal health and behaviors on the infant and mother during pregnancy and postpartum. Although vital records birth data are available to measure such outcomes of interest as low birth weight, preterm delivery, and the receipt of early and adequate prenatal care, the ability to examine important outcomes and behaviors in-depth had been restricted in Connecticut because of the limited information about key risk and protective factors available from birth certificate data.

Data for the 2013-2021 surveillance years are available, including information from a special opioid survey supplement conducted during the 2019 surveillance year and a COVID-19 supplement conducted during the last half of the data collection period for the 2020 surveillance year. These data have been provided to numerous programs within DPH, including reporting to the MCHBG, as well as a wide network of MCH partners statewide to support their work. Data dissemination has been achieved via fact sheets, data reports, presentations, and ad hoc data requests. The SSDI Coordinator is also the PRAMS PI, Project Director, Coordinator, and primary analyst. She will continue to work with the other PRAMS analyst and the CDC MCH Epi Assignee on additional data products in addition to fulfilling ad hoc data requests. Data collection for the 2022 surveillance year ended in June 2023 and our weighted data file is expected to be received from CDC by Fall 2023. Also completed in the 2022 surveillance year is our CT-developed supplement for cannabis surveillance that was created in response to 2021 State legislation legalizing adult use of cannabis products. The legislation includes the DPH’s role in surveillance, and PRAMS was one of three key data sources identified by the contractor for cannabis surveillance. A full survey supplement was completed for 2022 and the new PRAMS Phase 9 survey implement starting with the 2023 surveillance year retains one question about cannabis use before, during, and after pregnancy for long-term surveillance.

Another large part of the past year was working with the Title V MCH Director and other statewide partners to finalize the content of the CT PRAMS Phase 9 survey. This collaborative process is critical because numerous partners depend on PRAMS for informing their programs and/or grant reporting, so any potential changes in the survey needed to be carefully considered to ensure Title V and other MCH data needs are met to the best of our ability. Some of the new content will allow DPH to measure several SDOH and expand the ability to measure and address disparities and equity in CT. Some of the new questions include content around a) discrimination while getting health care during pregnancy, at delivery, or at postpartum care based on 13 different dimensions (e.g., including race, ethnicity, or skin color; disability status; immigration status; age; weight; sex or gender; sexual orientation; religion). This question is similar to an existing question on our Phase 8 survey that we had planned to expand to include more dimensions; b) being treated unfairly due to race, ethnicity, or skin color in any of the following situations: job, housing, police, courts, school (self/child’s), getting medical care; c) different types of disabilities before pregnancy; d) other SDOHs (transportation to medical appts, work, errands; not enough food); e) addition of same-sex couple options to certain questions (e.g., why not taking birth control); and f) management of high blood pressure during pregnancy and receipt of information (and how) of “warning signs” to watch out for during and after pregnancy that require immediate medical attention.

Qualitative Data Capacity

In 2021, the CT PRAMS Director/SSDI Coordinator along with key partners at Carey Consulting and the March of Dimes Connecticut Chapter formed a new Reproductive Justice Alliance (RJA) that had evolved out of a 2020 PRAMS Data to Action project around discrimination before and during pregnancy. Key objectives of the Alliance include improving access to respectful, quality maternity care; respectful interactions between patients, providers, and staff; health care systems, resources and policies related to maternal health; and accountability of health care systems by centering patients’ voices.

When people think about “data capacity,” qualitative data is often overlooked; yet it can be a rich source of information that can enhance existing data and better inform programs and policies by exploring topics, ideas, and even quantitative results in greater depth. Through focus group discussions (FGDs), in-depth interviews or other methods, dialogue generated from and between individuals can provide valuable details and context that can provide a more nuanced understanding of issues. One of the first activities the RJA prioritized at the onset was to replicate the exploratory and formative research that was performed by Columbia University’s Averting Maternal Death and Disability (AMDD) project which supported birth justice efforts in NYC. This research had included both focus group discussions (FGDs) with recent postpartum individuals, as well as in-depth interviews with staff in hospitals who have contact with pregnant and postpartum individuals to measure experiences of disrespect and mistreatment while receiving these services.

The focus of CT’s research is very similar, exploring overall experiences of disrespect and mistreatment, but we expanded the scope to include the prenatal care, delivery, and postpartum periods, and we have refined a set of questions tailored to CT. The research questions are: a) How do Black and/or Hispanic or Latino birthing people in CT experience disrespectful maternity care?; b) What are some strategies to improve respectful maternity care in CT, given the shared experiences and recommendations?; and c) What are some barriers and facilitators to maternity care services for Black and/or Hispanic or Latino birthing people?

The CT SSDI Program supports this project to increase statewide data capacity as it relates to equity, justice, and improving maternal and infant outcomes, especially within our Black and brown communities, through this qualitative work. The SSDI Project Coordinator is the Principal Investigator for this project. In the past year, the RJA – with support and leadership from both CT SSDI and HRSA TA funding – completed key elements of planning for the FGDs, including but not limited to developing a sampling plan; finalizing the questionnaire to be used during the FGDs, which included community engagement and feedback on content before finalizing; identifying community partners to assist with recruitment of participants and facilitators; translating documents into Spanish by a professional translation company, and also making refinements based on feedback from several Spanish language facilitators; completing an application to the Human Investigations Committee (DPH’s Institutional Review Board) for permission to conduct the research, receiving approval, and also submitting subsequent modifications as some project adjustments and study personnel were made; training of all focus group facilitators, led by our professional consultant; and performing registration and informed consent with interested participants;

Between April-July 2023, eleven FGDs were held in 6[1] out of 8 of CT counties (New Haven, Fairfield, Hartford, Litchfield, Windham, and New London) in English and Spanish. A total of 94 people were enrolled/consented and 55 people participated in the groups for a participation rate of 58.5%. Enrollment and participation were nearly identical for both the English and Spanish language focus group. Focus group transcripts are in the process of being cleaned and deidentified in preparation for analysis. Once cleaning and deidentification has been performed on all Spanish language transcripts, these documents will be sent to a professional translation company for translation as the final step prior to importing these files into the software.

Once analysis has been completed, an initial set of results will first be shared with focus group participants for feedback before distributing to a larger audience. A final report of the focus group results will be created while we continue work on the planning and implementation of the in-depth interviews with staff working in maternity care settings. Ultimately, results from both the FGDs and in-depth interviews will be analyzed and shared with the RJA and partners to better understand CT mothers’ experiences with disrespectful maternity care, identify issues with the delivery of care that might impact mother experiences and/or quality of care, and to help inform strategies and activities to improve respectful maternity care in CT. In addition, this information will be coupled with data collected from the new Phase 9 PRAMS survey when the data become available. In addition to the information that is on the Core survey, CT PRAMS are exploring additional content with partners to ensure all essential information is captured.

A more extensive progress report on the project and FGDs can be found in the Attachments.

[1] Since recruitment for Windham and New London Counties was so low, these groups were combined and even then, because individuals from these counties registered, we filled open slots with people on the wait list from other counties.