Patient Family Partners and Lived EXperience Integration Series (LEXIS) Project Abstract
Background
Against the backdrop of increasing rates of severe maternal and infant morbidity and mortality in the United States, with women of color disproportionately affected and a high degree of
preventability, there has also been an increasing desire to integrate patient perspective in this work. The teams and organizations seeking to measure and evaluate the contributing factors,
improve patient safety and quality, drive research relevant to patient outcomes, and address previously unmet conditions such as maternal mental health may benefit from fully engaging
those with lived experiences. However strong the desire to engage patients in this work or the belief that this missing perspective could lead to better outcomes, there remain gaps in how
organizations should effectively engage patients and their family members, where to find patient partners who are emotionally ready and oriented for collaborative and often challenging work,
and how to measure the effectiveness of this strategy.
Purpose
MoMMA’s Voices, a coalition of maternal and infant health patient advocacy organizations managed by the Preeclampsia Foundation, proposes the Patient Family Partners and Lived
EXperience Integration Series (LEXIS) Program to authentically and effectively integrate patient family partners on maternal mortality review committees (MMRCs), in maternal safety and
quality improvement initiatives at the state and local level, on research study teams, and in hospitals, public health clinics, and other settings where healthcare is delivered with the
intention that these strategies will improve outcomes for pregnant and postpartum people. The program includes the primary strategies of 1) recruitment and training of those with lived
experiences; 2) technical training and culture development for the entities seeking to engage lived experiences; 3) scaling both strategies for widespread adoption; 4) dynamic measurement
and evaluation of both strategies to make rapid programmatic improvements and gauge direct impact on improving outcomes for the target population of pregnant and postpartum people.
Outcomes Measurement
This proposal seeks to significantly expand the reach, effectiveness, and curriculum offerings of these two lived experience integration programs aimed at reducing maternal and infant mortality
and morbidity. Specifically, outcomes include increasing the currently limited program to reach new audiences, including MMRCs, more hospitals, and research centers, among others; and
create an evidence base for improved outcomes for pregnant and postpartum people derived from LEXIS engagement. Our analytics partner will lead extensive evaluation work to improve
the effectiveness of these programs and to disseminate data about how effective Patient Family Partner engagement can impact maternal health programmatic and systems-level outcomes.
