Journal Article Ppublish
PubMed: 39308381
Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together.
Prog Community Health Partnersh 18(3):371-380
Authors: Amanda J Young, Amanda Maresh, Shammara Pope, Rae Blaylark, Sangeetha Lakshmanan, L'Oreal Stephens, Rebecca Aderojou, Emily Meier, Gary Gibson, Amanda Okolo, Shamaree Cromartie, Niani Coker, Susan Paulukonis, Jennifer Fields, Mandip Kaur, Jay Desai
Abstract
BACKGROUND
The Centers for Disease Control and Prevention's Sickle Cell Data Collection (SCDC) program comprises multidisciplinary teams, which include community-based organizations. Partnering with community-based organizations (CBOs) is a novel approach to ensure that SCDC data are actionable.
OBJECTIVE
To better understand areas for mutual capacity building, we explored the relationships and dynamics between CBO and data teams within the SCDC program in 10 states.
METHODS
We conducted semi-structured interviews with CBO (n = 13) and SCDC (n = 10) participants and then categorized and compared text from each interview and across states. Six themes emerged.
LESSONS LEARNED
Transparency and trust are essential. Early CBO engagement and leadership are needed for trust and agreed upon priorities.
CONCLUSIONS
Participants contextualized trust, the most prominent theme, within discussions of racism and health inequities. Relationships between the CBO and data teams bring hard data and human experience together for advocacy, education, improved care, and a platform for the SCD voice.
MeSH
Trust, Cells, Anemia, Sickle Cell, Community Networks, Epidemiologists