Building on what was discussed previously (in III.E.2.b.iii.a. – in describing the MCH Epidemiology Workforce), additional information is provided below regarding key data efforts that exist within both the Epidemiology, Surveillance, and Federal Reporting Section (ESFR) and the Program Evaluation and Data Systems Branch (PEDS).

The following are descriptions of key data efforts within ESFR:

Maternal and Infant Health Assessment (MIHA)

MIHA is an annual, statewide-representative survey of women with a recent live birth in California, collecting self-reported information about maternal and infant experiences and about maternal attitudes and behaviors before, during, and shortly after pregnancy. The findings from analyzing the MIHA data are used to monitor the health of mothers and infants across California and to improve MCAH’s understanding of emerging health issues, such that decisions are informed, changes in public health programs and clinical practice are influenced, and program planners are assisted in targeting limited resources. Data products from MIHA include state, county, and regional “Snapshots” reports; specialized reports (e.g., related to specific population groups, like American Indians/Alaska Natives and Black mothers); and contributions to science (conference presentations and posters, journal articles).

Maternal Quality Indicators (MQI)

MQI is a special investigation into the burden of Severe Maternal Morbidity (SMM), with a particular interest in how birthing centers are equipped to contend with that burden. MQI is being conducted in stages, with the first stage describing SMM risk factors and methodological approaches to inform population-based surveillance, with findings published in Maternal Health, Neonatology, and Perinatology (Korst et al., 2021; 7[1]:3). The second phase described hospital performance variation related to the care of patients experiencing childbirth SMM, with findings published in The Joint Commission Journal on Quality and Patient Safety (Fridman et al., 2021: 47[11]: 686). The third phase assessed whether SMM components that were present on admission change the performance-related findings from the second phase, with findings published in The Joint Commission Journal on Quality and Patient Safety (Fridman et al., 2023: 49[3]: 129). Future phases will consider hospital assets that may contribute to hospital performance related to SMM (as studied in phases two and three).

Pregnancy Mortality Surveillance System (PMSS)

PMSS is a statewide surveillance of deaths among Californians who were pregnant within the prior year. It was initiated in 2018 to provide a timely and accurate accounting of deaths related to or aggravated by the pregnancy or its management. In California’s PMSS, deaths are identified by complex data linkage of vital statistics data and patient-level administrative data from hospitals, emergency departments, and ambulatory surgery centers. Coroner and autopsy reports and medical records are used to verify pregnancy status and timing to death, and a committee of experts conducts limited case reviews of the deaths to determine the underlying cause of death and whether it was related to pregnancy. From PMSS, MCAH not only has a robust measure of the burden but also a way to inform its in-depth reviews of maternal mortality (discussed immediately below). The first PMSS surveillance report was issued in 2021 and included the following highlights:

• The 2016 pregnancy-related mortality ratio is 14.1 deaths per 100,000 live births.
• Cardiovascular disease was the leading cause of death.
• Disparities in the burden were observed among Black women, older women, women whose pre-pregnancy weight categorized them as obese, and women relying on public insurance and living in less advantaged communities.

Pregnancy Associated Mortality Review (PAMR)

PAMR, an ongoing project in MCAH since 2006, is an in-depth comprehensive review of deaths among pregnant or recently pregnant Californians, up to one year after pregnancy, with the goal of eliminating (1) preventable deaths related to or aggravated by pregnancy and (2) associated racial/ethnic and health inequities. PAMR identifies deaths to be reviewed via the data sources described above for PMSS. PAMR reviews go beyond the scope of the PMSS review process by identifying quality improvement opportunities and making recommendations for change. Past PAMRs include a statewide review of obstetric hemorrhage deaths, a statewide review of pregnancy-associated suicide, and a statewide review of obstetric/medical deaths. At present, the two active PAMRs are a statewide review of maternal deaths from COVID-19 and a regional (i.e., within four contiguous counties in Southern California) review of deaths suspected to be medically related to pregnancy. The findings from PAMR include state reports and contributions to science (e.g., conference presentations and posters, journal articles).

The following are descriptions of key data efforts within PEDS supporting Title V-funded initiatives:

Black Infant Health (BIH) Program Data System and Analyses

The California BIH program aims to improve health among Black mothers and babies by empowering pregnant and mothering Black women to make healthy choices for themselves, their families, and their communities. BIH provides empowerment-focused group support services and client-centered life planning and is implemented in 17 sites across 15 local health jurisdictions (LHJ). The data collected during program implementation is entered into a web-based data system which is customizable to specific program sites, program services, and data collection forms. The data system tracks participant data including program enrollments, service planning, and delivery through 29 data collection forms. Data is entered by approximately 125 licensed users that are delivering services at the local implementing agencies. There are customizable dashboards of participants that show key information from interactions (e.g., group sessions, life planning meetings, assessments), as well as for management to monitor staff caseloads. The data system has a reporting tool, BusinessObjects Web Intelligence, where reports can be developed to monitor program fidelity and data quality for local and state staff use. There are over 60 reports developed for the BIH program that are readily available for local staff, including the following:

• Data Quality Reports
• Participant Information
• Program Activities
• Program Performance
• Staff Characteristics
• Custom Requests

Data files are extracted monthly so that customized reports for local, state, and external partners can be developed, automated, and analyzed using analytics software.

As the program evolves and curricula and processes change, the data system is updated to reflect changes to data collection forms. Data system documentation and training are provided routinely, additional ad hoc technical assistance is available to local implementing staff on demand, and monthly technical assistance calls are opportunities to discuss issues around data quality and data entry with state and local staff.

The program and participant data stored in the BIH data system was the main source of information for a recently completed program evaluation covering three state fiscal years (July 1, 2015-June 30, 2018). The evaluation focused primarily on the implementation of the prenatal group-based model of the program. The evaluation used a mixed-method approach of qualitative and quantitative data.

Adolescent Family Life Program (AFLP) Data System and Analyses

AFLP is a strengths-based case management program designed to support and empower expectant and parenting youth. The program emphasizes building resilience to help youth thrive during and after they exit the program. Case managers meet one-on-one with youth to establish a caring relationship, identify the youth’s needs and interests, and offer support with accessing services, setting goals, and planning for the future. AFLP is implemented in 17 sites across 14 LHJs. The data collected during program implementation is entered into a web-based data system known as Penelope. Penelope is customizable specifically to program sites, program services, and data collection forms. Penelope tracks participant data including program enrollments, service planning and delivery through 14 data collection forms. Data is entered by approximately 125 licensed users who are delivering services at the local implementing agencies. There are customizable dashboards of cases (family units), individuals, service files (distinct enrollments), and service events (interactions between youth and case managers). Penelope has both built-in reports and a separate Tableau-based online dashboard page, where reports can be developed to monitor program implementation and data quality for local and state staff use. There are over 20 reports developed for AFLP that are readily available for local staff covering a wide range of areas such as data quality, participant demographics, caseload and contacts, and referrals. Data files are extracted monthly from Penelope so that customized reports for local, state, and external partners can be developed, automated, and analyzed using analytics software. Additional data is captured directly from youth through the Qualtrics survey system and integrated into Penelope using a web gateway.

As the program evolves and content and processes change, the data system is updated to reflect changes to data collection forms. Data system documentation and training are provided routinely, additional ad hoc technical assistance is available to local implementing staff on demand, and monthly technical assistance calls are opportunities to discuss issues around data quality and data entry with state and local staff.

Program and youth data stored in Penelope is the main source of information for the following:

• Annual Data Summaries
• Monthly Data Quality Dashboards
• Program Data Briefs

Local Health Jurisdiction (LHJ) Information Management System

The LHJ Information Management System collects information via the Local MCAH Annual Report on progress of program activities, the extent to which the LHJ met the Local MCAH Scope of Work (SOW) goals and deliverables, and how Title V funds were expended in the fiscal year. This reporting mechanism supports monitoring and evaluation of all 61 LHJs across the state of California. Information from the Local MCAH SOW Annual Report is used to fulfill federal reporting requirements, including reporting on Evidence-based Strategy Measures and counts of individuals served by Title V funding.

CDPH/MCAH PEDS staff, in collaboration with division partners, have developed an electronic information system for the purpose of collecting, monitoring, and analyzing Annual Report information. The information system allows for the collection of both quantitative and qualitative county-level information. The system also allows for the review, monitoring, and analysis of results at the topic level, as opposed to the county-level analysis staff were restricted to in previous reporting cycles. For example, current system capacity and functionality allows for the aggregation of total individuals referred for health insurance in the fiscal year across all 61 LHJs and stratified by age group, population domain, etc. This level of analysis was not easily achievable with utilization of the previous information system, given current division staffing capacity.

CDPH/MCAH staff provided technical assistance and guidance to LHJ staff throughout implementation of the newly developed information system. This technical assistance allowed for the successful sharing of feedback and ensured ease of use for the information system. Statewide presentations were conducted to familiarize local staff with the information system and support the stakeholder engagement process. This support, both prior to the launch of the information system and throughout the reporting cycle, facilitated a successful implementation process and strengthened collaborative partnerships.

The information system allows for the production of both automated reports and in-depth analysis of Annual Report information. Since implementing the information system, PEDS staff have utilized this functionality to generate internal reports of Annual Report results and analyze and synthesize results for the fulfillment of federal reporting requirements. These reporting processes will be used to inform the future direction of Local MCAH Program activities and goals. PEDS staff are engaged in ongoing conversations with division partners to plan for the further dissemination of Annual Report information in future years.

Human Stem Cell Research

Over the past several years, the California Legislature has enacted legislation related to the oversight of human embryonic stem cell (hESC) research that has allowed research to be developed and implemented while maintaining high ethical standards. MCAH is responsible for data collection, monitoring, and analysis related to hESC research in California that are not funded by the California Institute for Regenerative Medicine (CIRM). To ensure effective monitoring and oversight of hESC research in California, the MCAH Human Stem Cell Research (HSCR) Program developed and implemented a system for ongoing data collection and summarization. All reporting institutions engaging in hESC research are responsible for providing an annual record of hESC research activity not funded by CIRM to the MCAH HSCR Program. Additionally, all reporting institutions engaging in human oocyte retrieval are responsible for providing an annual record of research involving human oocyte retrieval. In accordance with Health and Safety Code §125119.3, the MCAH HSCR Program developed a database for incoming reports.