Community-Led Research: Qualitative Depth and Quantitative Power
At the UCSF Center for Birth Justice we believe that those with lived experience are uniquely positioned to identify and solve the challenges they face. Our approach to research is deeply rooted in the principle of “Nothing About Us Without Us!”. This commitment has led to the development of programs designed to empower and train community members to become leaders in the research process, ensuring that studies are informed by, led by, and benefit the communities most impacted by preterm birth and maternal-infant health inequities.
We see our Community Innovators program and the developing Community Data Innovators program as two complementary sides of the same coin, both vital components of our strategy to center community voices in research.
Starting with Qualitative Depth:
The Community Innovators
The Community Innovators program is a community engagement project based on a community-based participatory action research model. Building on this model, CI educated and developed community scientists, with an emphasis on economic workforce development. The program’s objective is to create space in research settings for community voices to be heard and positioned as leaders in the field.
Through CI, we partnered with community members, including those from Black, Latina/o/x, Native American, and Pacific Islander communities disproportionately affected by preterm birth.
- In the 2017 San Francisco cohort, for example, ten women were trained as researchers. They received training in research methods, including qualitative methods, and conducted focus groups with 84 women to gather in-depth insights. This qualitative research focused on critical issues like housing security for pregnant women. The Innovators then used their findings to inform policy recommendations and educate city and county leaders.
- We also launched a second cohort in Oakland in 2020, focusing on issues related to preterm birth disparities in those communities.
Adding Quantitative Power:
The Community Data Innovators
The success of CI, which empowered community members to move from data collection to action and advocacy using qualitative methods, led us to ask a crucial question: What could be possible if we trained community members to be able to utilize large quantitative datasets?
The Community Data Innovators program is designed as an extension of the previous Innovators program, leveraging our prior experience training community researchers. However, this new program is differentiated by its explicit focus on quantitative data. Recognizing that traditional research has often overlooked priorities identified by those directly affected, this initiative aims to put the power of data in the hands of the people.
We are developing the Community Data Innovators program to train community members – including parents with lived experience of preterm birth, doulas, elders, and other
community leaders – to understand and utilize large quantitative datasets. Participants will learn quantitative methods and work with a comprehensive dataset of births, morbidities, and deaths in California.
This program is designed to enable community members to design quantitative research studies and analyze data to answer important new questions about adverse birth outcomes.
By training community members in quantitative data analysis, we aim to uncover new insights and generate compelling evidence from large datasets that can drive civic engagement, inform policy changes, and build stronger evidence for policy changes directly from the affected community. Having people with lived experience lead this type of research increases the likelihood that the findings are relevant, credible, and actionable.
Support for Community-Led Research
Both programs are seeking funding to support the training, mentorship, and participation of 10-15 community members.
Together, the Community Innovators and the Community Data Innovators represent our commitment to empowering communities with diverse research skills – from the rich insights of qualitative stories to the powerful patterns revealed by quantitative data – all in service of advancing birth equity and justice.