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Improving Maternal Health by Leveraging Existing Resources, Data Linkage and Standard Reporting for Patient-Centered Outcomes Research

Improving Maternal Health by Leveraging Existing Resources, Data Linkage and Standard Reporting for Patient-Centered Outcomes Research
Agency
  • Office of the National Coordinator (ONC)
Start Date
  • 5/1/2024
OS-PCORTF Strategic Plan Alignment
  • Primary: Goals 1: Data Capacity for National Health Priorities
  • Secondary: Goal 2. Data Standards and Linkages for Longitudinal Research

 

STATUS: Active Project

BACKGROUND

Addressing maternal health is crucial for several interconnected reasons, each contributing to the overall well-being of individuals prior, during and after pregnancy. For example, it is difficult to study how medications are passed via lactation, because currently, there is not a standardized way to capture lactation information. This leads researchers to often analyze proxy data elements, which is not ideal. Additionally, clinical notes for newborns may have a summary record that may include information on breastfeeding and medications, both at the time of discharge. There is a myriad of other use cases that would benefit from a standardized data set tailored to PCOR studies on individuals prior, during pregnancy, and after delivery. A solid foundation of data elements and classes are needed to best address the above.

ONC oversees the United States Core Data for Interoperability (USCDI), which is a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange. USCDI is updated and incrementally expands on an annual basis through a predictable, transparent, and collaborative process that involves public input. USCDI version 1 is adopted as a standard in the ONC Cures Act Final Rule. The USCDI+ provides a framework to establish, harmonize, and advance the use of standardized interoperable data that extend beyond the core data in the USCDI. USCDI+ efforts are grouped into domains, which are then more tightly focused on use cases and data needs.

There are currently six (6) USCDI+ domains: Quality, Public Health, Maternal Health, Behavioral Health, Cancer, and Real-World Data. USCDI+ Maternal Health outlines the information regarding the peri- and post-natal periods that should be electronically available and standardized to support appropriate terminology standards to use within health IT systems. With the comprehensive dataset developed through this project, USCDI+ Maternal Health will extend USCDI and serve as the reference to guide development and adoption of data standards, to include data elements that are necessary for high quality maternal care, equitable outcomes, maternal health research, and to support maternal public health initiatives. This, in turn, supports the interoperable flow of information that follows the patient and is part of care coordination across the various provider types that are part of the patient’s care team.

PURPOSE

The overarching goal of this proposal is to develop a comprehensive USCDI+MH dataset, foundational for implementing and adopting standards to be able to ultimately improve the access, quality of care, and health outcomes for maternal populations. Disseminating these findings will inform building out HHS and PCOR data capacity and relevant policies for equitable and timely maternal health interventions and outcomes.

KEY IMPACT

In the short term, the key impact of this project on PCOR data capacity is improving data standards and interoperability on maternal health. In the long term, the project will address challenges in maternal health data through [1] the implementation of the developed comprehensive USCDI+MH dataset and [2] enhanced efficiency with which PCOR studies are designed and conducted due to using standardized data.

At an individual level, the adoption and implementation of reporting standards provides the impetus to reduce gaps, enhances interoperability and increases data availability to support decision-making that will ultimately influence the quality of care provided. By leveraging advanced technologies, collaborations, and an integrated approach, the project aims to bridge critical gaps in maternal health data capacity, surveillance included, ultimately contributing to healthier pregnancies and improved outcomes for women across the nation. This comprehensive data strategy serves as a foundation for groundbreaking research, analysis, and evidence-based interventions in the realm of maternal health.