The Puerto Rico State Systems Development Initiative (PRSSDI) is housed in the MCAH Division. The aim of PRSSDI is to develop, enhance, and expand MCAH data capacity in a timely manner to allow for informed decision making and resource allocation that supports effective, efficient, and quality programming for women, infants, children, adolescents, and children and youth with special health care needs.

PRSSDI assists in improving the MCAH data capacity within the five-year Health Needs Assessment (HNA) and ongoing interim HNAs; supports data needs for the annual Title V MCH Block Grant Application/Annual Report; and develops and tracks data for the NOMs, NPMs, SPMs, and ESMs. PRSSDI also advances the development and utilization of linked information systems between key MCH datasets.  

The main advantage of the PRSSDI is a wide array of professional resources in the Title V Monitoring and Evaluation Unit (MEU) that help ensure the accomplishment of PRSSDI project goals and objectives and other MCH data capacity efforts. One of these efforts is the development of instruments to gather information for those MCAH indicators with limited data source and/or information needed for monitoring and measure progress toward the established Title V MCH Block Grant NPMs and NOMs, since they are not included in most of the national surveys. The MEU is composed of the following professionals: the epidemiologists and Biostatistician who oversee quantitative research and analysis on MCAH health issues, the Evaluator that assists in the development of the SPMs and the ESMs, and the Cultural Anthropologist who is in charge of qualitative research and analysis. Other assets are a Pediatrician, an OB/GYN Consultant and a Psychologist, that provide support to the team and the PRSSDI efforts. The MEU is supervised by the MCAH Division Director.

For the past several years, PR has been improving the availability, timeliness, and quality of the MCH data toward multiple mechanisms to report in the Title V MCH Block Grant Application/Annual Report. Through letters signed by the Secretary of Health, PRSSDI gathers MCAH data and information from multiple programs within and outside the DOH. Strengthening the network of collaborating programs has been an effective method for improving data quality.

In the past, MCAH and CSHCN Programs developed and implemented customized national surveys such as PRAMS-like and SLAIT-like surveys in order to access supplemental data not available thru other sources.  This changed in 2016 when PR became the first jurisdiction participating in PRAMS which allows comparable data between PR and mainland. PR SSDI collaborated with the MCAH Division to submit the PRAMS Project application. In addition, by 2019, the MCH-JS was performed in order to measure the selected Title V indicators for the jurisdictions.

PRSSDI will be assessing the possibility to participate in others national surveys in order to have federally available data for the NPMs and NOMs and to perform data analysis and research.

The Puerto Rico Early Hearing Detection and Intervention (PR EHDI) Program receives funds under CDC NOA “Enhancement of the PR EDHI-IS for Documentation and Use of Follow-up Diagnostic and Early Intervention Services Data” to enhance and fully develop the PR EHDI-IS. The enhanced information system will be capable of accurately identifying, matching, collecting, and reporting data on all live-births through the three components of the EHDI process (screening, diagnosis, and early intervention). The PR EHDI-IS development is in accordance with Programmatic Goals 2- 8 of CDC EHDI-IS Functional Standards which includes attributes such as unduplicated and individually identifiable records. Since 2019 all birthing hospitals are reporting the infants’ status and the results of the hearing screenings through the new EHDI-IS (module 1).  

Regarding access to electronic health data, PRSSDI resumed data linkages with several sources (birth data, infant mortality, Medicaid eligible, WIC). OITA collaborates in performing the birth – Medicaid eligibility, and birth – infant deaths linkage files. The linkage between birth and WIC participants file is executed by the PRSSDI. An evaluation process was implemented to ensure the validity and completeness of the data linkages which is continuously performed to all linkage files to assess the quality of the linkage. PRSSDI will continue the development and utilization of linked information systems between key MCH datasets, in order to evaluate a more comprehensive range of MCA outcomes between agencies. 

Since 2005, MEU monitors maternal deaths thru the Puerto Rico Maternal Mortality Epidemiological Surveillance System (SiVEMMa). Electronic data linkage is periodically performed using the death, birth and fetal death files. Newspaper articles help to identify additional cases, mainly those related to homicides of pregnant women or sudden deaths for unknown causes. To further enhance the maternal mortality surveillance and the review process, the PRDOH submitted a bill to the PR legislature to establish as a State Act the SiVEMMa and the Maternal Mortality Review Committee (MMRC). The MCAHD played a leading role in developing the proposed bill including participation in public hearings. Act 186 of 2016, known as the Puerto Rico Maternal Mortality Epidemiological Surveillance System Act, provides the legal tools for the collection of data needed for a complete review of maternal deaths in Puerto Rico (underlying health, social and other contributing factors). The Act also provides for the creation of the MMRC (composition, privacy, legal protection, and responsibilities) to review maternal deaths to make recommendations for preventive actions. All members of the MMRC must be officially appointed by the Secretary of the PRDOH. It includes a multidisciplinary panel of experts in the mental, behavioral, medical, and data analysis professions.  SiVEMMa is also in the process to report to the CDC Maternal Mortality Review Information Application (MMRIA).  PRSSDI has received the needed documentation of the methodology and the process of integration to the system.

Funds for the Zika Active Pregnancy Surveillance System (ZAPSS) and the Zika Birth Defects Surveillance System (ZBDSS) ended July 31, 2019. Nonetheless, on August 1, 2019, the PR Department of Health in collaboration with the CDC implemented the Emergent Threats to Mothers and Babies Surveillance System (ETMBSS). The ETMBSS carries on the activities of the ZAPSS and the ZBDSS to safeguard that a greater proportion of affected infants are referred to the appropriate medical follow-up and early intervention services, and to ensure there is evidence of the prevalence of birth defects potentially related to congenital Zika virus infection. In addition, the system monitors and responds to any other emerging threats, especially those related to infectious pathogens which may affect the population of pregnant women and their offspring. Since March 2020, the ETMBSS is monitoring pregnant women with evidence of positive Covid-19 in molecular laboratory results.

One challenge the PRSSDI faces is gathering reliable health data derived from insurance plan claims, specifically claim data that come from the GHP. For the MCAH and the CSHCN Programs having reliable data is extremely important to get a clear picture of the use of and services received by patients in the health care system.  Every year PRSSDI requests data to the PRHIA, the agency that manages the GHP. PRHIA receives claim data from five Health Insurers Companies who provide coverage for the GHP.

There are significant oscillations in claims data between years. Although several strategies were used to have more accurate data, PRSSDI had to request access to the PRHIA information system to make in-depth evaluations of these claim records. By ensuring access to these data PRSSDI will be able to perform data linkages and analyses to assess needs and for monitoring the MCAH strategies based on services.  Since this access has not been granted yet, the PRSSDI will continue its communications with PRHIA in order to achieve an agreement that will allow the PRSDDI to provide support to their personnel with the data that is required and finally obtain reliable data.

To formalize data sharing collaboration with agencies, PRSSDI has been performing several memorandums of understanding (MOU), through the MCAH Division. Among these are: the PR Primary Health Association that supports and endorses the participation of HRSA funded Community Health Centers in the HNA and other investigations to be carried out; the Demographic Registry Office that ensures the continuous access to the vital events data at any time (provisional or final data files); and the CDC for data sharing for the Multi-Jurisdiction Risk-Appropriate Care Analysis.  Currently, the PRSSDI and the MCAH Division are in the process of updating the MOU with ASSMCA for data sharing collaboration and ensure services for participants identified in the different programs that need mental health support.

The ETMBSS routinely performs data linkages with the PR-BDSPS, the Biological and Chemical Emergencies Laboratory (BCEL), and HEIDI-IS. Data linkages are conducted on a case-by-case basis to identify cases meeting the surveillance system’s inclusion criteria and to corroborate data quality and completeness. The PR Vital Statistics Record Office (VSRO) granted access to and shares birth certificate data with ETMBSS epidemiologists to improve the capacity for rapid case ascertainment of birth defect cases and to validate information. An agreement with the PR-HIA allows for the exchange of information to validate demographic and other data information, and to ensure case monitoring and follow-up.

For data and information dissemination, MEU provides their support to MCAH Program sharing statistics at the general public as well as to the media. We also participate in meetings providing MCAH data and statistics to our allies and in conferences such as AMCHP, City Match, among others. MEU also developed instruments such as the Integrated Index of Maternal and Infant Health Status (IIMIHS) that includes 14 maternal and infant health indicators by municipality to assess the health needs of the target population by geographic area (attached as part of the Supporting Documents). Other analyses are performed like the CDC Levels of Care Assessment Tool (CDC LOCATe) to help MCAH monitor neonatal and maternal risk appropriate care. 

PR will be part of a Multi-Jurisdiction Risk-Appropriate Care Analysis, which consists of analyzing birth outcomes and maternal complications according to the level of care (neonatal or maternal) as assessed by CDC LOCATe. MEU linked LOCATe database with vital statistics (birth and infant mortality) and maternal complications (according to insurance claims) and shared it with CDC for the Risk-Appropriate Care Analysis.

We support prevention and awareness initiatives such as Month of Prematurity Prevention of March of Dimes, the Adolescent Pregnancy Prevention Month and Safe Christmas Campaign. For the pregnancy prevention, we collaborate providing updated data for maternal and infant health indicators that CAHP disseminates to the press and stakeholders, organizations, and general public. In addition, we provide data for the initiatives developed by March of Dimes PR Chapter as well as data of non –intentional injuries to EMSC for the Christmas Campaign.

In terms of the five-year health needs assessment (HNA) and the ongoing HNA, they are performed mainly by MEU. The MEU team plays a key role in conceptualizing, organizing, and carrying-out the HNAs. An internal steering committee - led by the PRSSDI Coordinator- supports the HNA process and decision-making.  The steering committee consists of the MEU staff, the Pediatric Consultant, the MCH Director, staff from several MCH programs and key stakeholders is established to support the HNA process.  Leading the efforts of the HNA gives to the PRSSDI the advantage to support directly the data capacity in each step of the HNA process.