Project Summary
The project team aims to develop an alternative maternal health data collection system to the recently eliminated surveillance model, Pregnancy Risk Assessment Monitoring System (PRAMS), that authentically represents Hawai’i’s diverse, strategically marginalized populations.
Research Questions/Aims
- What survey domains and data collection methods best capture perinatal experiences in Indigenous and marginalized communities?
- Can a Community Health Worker (CHW)-led, community-governed model improve data quality, participation, and actionability?
- How can this model advance Indigenous data sovereignty and inform long-term infrastructure?
Actionability
- Generate community-centered, culturally responsive, and systemically actionable information about perinatal experiences in Hawaiʻi; and
- Establish a model that can be replicated nationally.
Meeting the Moment
With the PRAMS at risk, there will be a critical data gap in maternal and perinatal health surveillance, with no other immediate option for capturing the lived realities of pregnant and postpartum individuals in Hawai’i. The data gap is both a crisis and an opportunity, and this project is working to build a Hawai‘i-specific alternative to PRAMS that reimagines how data is gathered, governed, and mobilized for equity.
Outcomes
Health Outcomes: Better understanding of Hawai‘i’s diverse population’s maternal health and birthing outcomes, with particular interest in Native Hawaiians and Pacific Islanders
Other: Surveillance data on monitoring maternal behaviors before, during, and after pregnancy to reduce mother and infant morbidity and mortality
Methodology
Using a community-based participatory research design coupled with Indigenous research methodologies and implemented through an established community-led instrument development process, the project will unfold in three phases: (1) co-development of the tool through structured community engagement; (2) validation across Native Hawaiian and Pacific Islander (NHPI) and other populations with linguistic and disability adaptations; and (3) statewide pilot testing with 400 perinatal participants. A Community Accountability Board (CAB) composed of community members, and a Systems Accountability Board (SAB) composed of CHWs, cultural practitioners, and maternal child health experts will oversee all phases, including the drafting of the proposal, study design, data collection, and interpretation and dissemination.
Tagata Moana Hui Foundation