A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
By Anastasia Y. Gordon, Baylee De Castro, Larry Rand, Linda S. Franck, Monica R. McLemore, Norlissa Cooper, Schyneida Williams, Shanell Williams
Abstract
Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research priority setting and funding decisions is only beginning to be recognized as important, and methods for doing so are nascent. This protocol describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at high socio-demographic risk for preterm birth. The goal was to directly involve these women in identifying and prioritizing their unanswered questions about pregnancy, birth and neonatal care, and treatment so that their views could be included in research priority setting by funders and researchers. The RPAC protocol may be used to meaningfully involve under-represented groups at high-risk for specific health problems, or those who face disproportionate burden of disease, in research strategy and funding priority setting.
