Developing a research strategy in partnership with communities affected by preterm birth

Parents in NICU

parents in a cirlce

Parent Mentors

A commitment to community partnership is at the center of the California Preterm Birth Initiative’s work. By conducting research in partnership with the communities most affected by prematurity we are better positioned to truly understand factors that may drive preterm birth, and develop programs and policies that can prevent prematurity and improve health outcomes of babies born preterm.

Our Evolution 

During our planning year, we grappled with the question, 'how can we address preterm birth research differently?' Decades of research have been conducted on preterm birth without any major declines in overall rates. We believed that for research to be done differently we needed to partner with people most affected by preterm birth, possibly leading to breakthroughs in addressing this stubborn epidemic, as has been demonstrated with other conditions such as HIV. We believed that people with lived experience should not only collaborate in the formation of research questions but also partner in the decisions of who received funding. 

In 2015 we began partnering with San Francisco's Homeless Prenatal Program and Black Infant Health Program to interview women who had experienced a preterm birth and were from communities most impacted by the preterm birth epidemic. Led by Linda Franck and Monica McLemore, we developed a novel method for identifying and prioritizing researchable questions that reflected parent's uncertainties about the causes and consequences of preterm birth, based on their experiences and values.

Based on the initial success of the method, we expanded the work to Oakland and Fresno, two other communities with high preterm birth disparities. The priority questions and topics of parents in San Francisco, Oakland and Fresno have guided the California Preterm Birth Initiative’s research strategy and funding decisions. We call on research funders and researchers to join us in tackling the unanswered questions about pregnancy, birth and newborn health that matter most to parents, and to partner with communities when conducting this research. Join us! 

 

Priority research questions from communities with high preterm birth rates

 

What research do men want?

Men's research priorities - Community Report

Fresno fathers' Questions

Coming Soon!
Reports from research prioritization with dads in Oakland and San Francisco


Webinar

Watch researchers and parents explain the process of creating these prioritized questions on the recorded webinar session - Research Justice for Parents of Color: Prioritizing Their Unanswered Questions About Pregnancy and Birth