Louisiana Maternal and Infant Data Collaborative

Overview

The Louisiana Maternal and Infant Data Collaborative (The Data Collaborative, formerly The Louisiana Pregnancy Registry) is a multi-site research initiative that seeks to facilitate rapid, stakeholder-informed aggregation and analysis of electronic health record (EHR) data to advance maternal health policy and enhance clinical care quality statewide.

The Data Collaborative team comprises a project and data science team housed within LPHI. It is governed by a Steering Committee of maternal and infant health experts from Ochsner Health System, Tulane University School of Public Health, Louisiana State University Health and Sciences Center of New Orleans, and the Institute of Women and Ethnic Studies. The technical infrastructure underpinning The Data Collaborative’s efforts aggregates EHR data from participating health systems to enable large-scale analysis of indicators of maternal and infant health.

Core Data Collaborative Functions

Data Collection - The Data Collaborative collects electronic health record data from Louisiana health systems, including Ochsner Health, LCMC Health, and legacy Tulane University hospitals.
Data Analysis - The Data Collaborative enables large-scale analysis of maternal health indicators.
Use Case Development - The Data Collaborative enables use cases to support public health surveillance, research, program evaluation, and quality improvement efforts.
Governance - LPHI coordinates the Data Collaborative in partnership with a steering committee of Louisiana partners and experts in MCH.

Requesting Information

Requesting data from the Data Collaborative involves working with LPHI’s data services team to assess feasibility, refine your request, and seek the necessary approvals.

Individual-level Data Requests

General Information Request

Security Measures FAQ

Requesting Information Process Overview

Data Collaborative Overview

Poor maternal and child health (MCH) outcomes, owing to a complex array of interconnected factors - including inadequate access to timely healthcare services, socioeconomic disparities, and geographic barriers - deeply impact the birthing people of Louisiana. Additionally, race plays a significant role in poor MCH outcomes, as both systemic racism and discrimination can limit access to quality healthcare and social supports, leading to health disparities. Additional challenges faced in addressing poor MCH outcomes include a lack of actionable data to health systems, providers, researchers, health departments, policy makers, community-based organizations, and MCH coalitions. The Data Collaborative provides access to timely and actionable data on maternal health for a variety of partners, such as researchers, public health authorities, healthcare providers, and community organizations, by aggregating data from participating health systems to enable large-scale analysis of MCH indicators.
The Data Collaborative uses the network and data infrastructure of the Research Action for Health Network (REACHnet). REACHnet is an innovative data network for conducting efficient, multi-site research that includes electronic health record data for millions of patients from multiple partner health systems. With national and local collaborators, REACHnet facilitates research that addresses healthcare questions of critical importance to patients and communities and contributes to the evidence base that informs healthcare decision-making to improve population health. Currently, Ochsner Health and LCMC Health, including legacy Tulane University hospitals, contribute data to the Data Collaborative.
The Data Collaborative includes data from electronic health records standardized to a Common Data Model (CDM), which relies on medical coding systems used in clinical practice such as International Classification of Disease (ICD) codes for diagnoses and Current Procedural Terminology (CPT) for procedures. Data for pregnancies that resulted in live birth, stillbirth, or pregnancy loss (miscarriage, ectopic, trophoblastic disease) since 2016 are included in the Data Collaborative.* There are over 160,000pregnancies in the Data Collaborative associated with over 120,000 unique birthing persons. For each patient, available data from one year pre-pregnancy through one year post-pregnancy are included. Maternal records are linked to infant records for over 90% of live births.
*Abortions are not included in the Data Collective because abortion has been illegal in the state of Louisiana since June 24, 2022.
The Data Collaborative is coordinated by the Louisiana Public Health Institute (LPHI) and led by a steering committee of local MCH partners and experts. LPHI serves as the implementation lead and convener for the Data Collaborative, as well as the technical lead through REACHnet, the data infrastructure from which the Data Collaborative is populated. Health systems that contribute to the Data Collaborative retain ownership and control over their data. New requests for indicators must be approved by the data contributors. Ongoing strategic direction of the Data Collaborative is led by the steering committee representing health systems, providers, public health partners, academic and research partners, community members, and community-based organizations.