Research priorities of women at risk for preterm birth: findings and a call to action

Shanell Williams,Nakia Woods,Tania Pacheco,Monica R. McLemore,Fanta Nelson,Anastasia Y. Gordon,Linda S. Franck,Lisa Edwards,Schyneida Williams,Artie Padilla,Larry Rand,Kathryn Millar

doi:10.1186/s12884-019-2664-1

Abstract

BackgroundTraditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research.MethodsWe used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve ‘top-priority’ research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences.ResultsFifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions.ConclusionsThese findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

Highlights

Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease
We report the findings from the application of the Research Justice framework [21] and the Research Priorities of Affected Communities (RPAC) method [13] for the development of a new pregnancy and newborn care research strategy co-created by PTBi-CA researchers and women most affected by preterm birth and other adverse birth outcomes
We found that women had many unanswered questions about the causes, prevention, consequences and treatment for health problems related to pregnancy and for newborns, with many related to preterm birth

Summary

Introduction

Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. Almost all research, including CBPR, was typically funded by agencies with limited to no requirement of PPI in setting the research strategy or research agenda This is beginning to shift with large national initiatives such as those in the United Kingdom [6, 7], United States (US) [8], and Canada [9], there remain concerns about whether study participants accurately reflect characteristics and views of the people who bear the greates burden of the disease or condition under study and that they have sufficient influence in the decision processes of the funding agencies [10,11,12,13,14]. Major structural inequalities in the research enterprise persist and perpetuate injustice in healthcare knowledge creation and, as a result, in healthcare delivery [15]

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Discussion

Conclusion