Reimagining Perinatal Research Through Knowledge Sharing
The Weight of It All Research Study’s Individual Participant Reports
Bibliographic Data
Research has too often treated Black pregnant people as data sources rather than as people with a right to what’s learned about them. This article describes how a community-academic team co-developed individual participant reports (IPRs) within a prospective cohort study as a direct attempt to return data ownership to participants and rebalance power between researchers and community. The process of developing IPRs was grounded in the Knowledge-to-Action framework and built iteratively from early in the study’s lifecycle. Community members shaped the reports from the start, contributing across every phase: conceptualization, production, distribution, and follow-up. The workflow that emerged was reproducible and evaluated by participants themselves. IPR promotes the opportunity for participants to utilize information collected about their bodies and minds to support their full potential of health and well-being, which is the essence of health equity.
data ownership · knowledge-to-action framework · participant engagement · perinatal research · Power Balance · prospective cohort · university-community collaboration · Community Health and Development · Ethics in Clinical Research · Qualitative Research Methods and Ethics
Lost in knowledge translation
Research electronic data capture (Redcap)—A metadata-driven methodology and workflow process for providing translational research informatics support
The Redcap consortium
Decolonising research methodologies
Adapting Western Research Methods to Indigenous Ways of Knowing
Pollution Comes Home and Gets Personal
| Highly cited | No |
|---|