BACKGROUND: Data equity is key to advancing health equity. Intentional oversampling or priority populations paired with shared decision making with communities can support the collection of more inclusive and meaningful data that reflects the values, cultures, and strengths of the communities we seek to represent.
METHODS: To inform programs and policies that advance health equity for birthing people and families, the Colorado Department of Public Health & Environment (CDPHE) Baby & You Program surveys Coloradans at four time points during the first three years postpartum. The program’s dedicated state funding and non-prescriptive mandate provides unique flexibility to share power and be guided by community needs. To this end, Baby & You has democratized its survey and data product development processes (e.g., open calls for survey proposals, open & flexible participation for survey development, partner-led data product development, compensation for community participation)
RESULTS: Since 2023, Baby & You has convened 166 people over 38 working meetings to co-develop surveys and data products; co-hosted a retreat and community discussion for Black birthing people; and collaborated on a Native community baby shower and discussion. Baby & You collaborated with partners and community to develop four program surveys, including a new supplement on birth experiences. In evaluations, 100% of participants agreed that their opinions/perspectives were respected and helped shape survey content, their time was well spent, and they would choose to participate again. We completed our first collaborative data product development process in 2025, resulting in a report on perinatal mental health for healthcare/legislative decision-makers. In 2026, we are hosting community data chats among priority populations.
IMPLICATIONS: Building a community-led data collection system within a government context takes resources, time, commitment, flexibility, diplomacy, transparency, and humility, but can yield more meaningful data through trusting, reciprocal relationships with partners and community.
