The Massachusetts Racial Equity Data Road Map: Data as a Tool Toward Ending Structural Racism.

BACKGROUND: In 2015, the Massachusetts Department of Public Health (MDPH) adopted a Title V maternal and child health priority to "promote health and racial equity by addressing racial justice and reducing disparities." A survey assessing staff capacity to support this priority identified data collection and use as opportunities for improvement. In response, MDPH initiated a quality improvement project to improve use of data for action to promote racial equity. METHODS: MDPH conducted value stream mapping to understand existing processes for using data to inform racial equity work. Key informant interviews and a survey of program directors identified challenges to using data to promote racial equity. MDPH used a cause-and-effect diagram to identify and organize challenges to using data to inform racial equity work and better understand opportunities for improvement and potential solutions. RESULTS: Key informants highlighted the need to consider structural factors and historical and community contexts when interpreting data. Program directors noted limited staff time, lack of performance metrics, competing priorities, low data quality, and unclear expectations as challenges. To address the identified challenges, the team identified potential solutions and prioritized development and piloting of the MDPH Racial Equity Data Road Map (Road Map). CONCLUSIONS: The Road Map framework provides strategies for data collection and use that support the direction of actionable data-driven resources to racial inequities. The Road Map is a resource to support programs to authentically engage communities; frame data in the broader contexts that impact health; and design solutions that address root causes. With this starting point, public health systems can work toward creating data-driven programs and policies to improve racial equity.

Assessment of Birth Defects and Cancer Risk in Children Conceived via In Vitro Fertilization in the US.

Importance: Children with birth defects have a greater risk of developing cancer, but this association has not yet been evaluated in children conceived with in vitro fertilization (IVF). Objective: To assess whether the association between birth defects and cancer is greater in children conceived via IVF compared with children conceived naturally. Design, Setting, and Participants: This cohort study of live births, birth defects, and cancer from Massachusetts, New York, North Carolina, and Texas included 1 000 639 children born to fertile women and 52 776 children conceived via IVF (using autologous oocytes and fresh embryos) during 2004-2016 in Massachusetts and North Carolina, 2004-2015 in New York, and 2004-2013 in Texas. Children were followed up for an average of 5.7 years (6 008 985 total person-years of exposure). Data analysis was conducted from April 1 to August 31, 2020. Exposures: Conception by IVF for state residents who gave birth to liveborn singletons during the study period. Birth defect diagnoses recorded by statewide registries. Main Outcomes and Measures: Cancer diagnosis as recorded by state cancer registries. Cox proportional hazards regression models were used to estimate hazard ratios (HRs) and 95% CIs for birth defect-cancer associations separately in fertile and IVF groups. Results: A total of 1 000 639 children (51.3% boys; 69.7% White; and 38.3% born between 2009-2012) were in the fertile group and 52 776 were in the IVF group (51.3% boys; 81.3% White; and 39.6% born between 2009-2012). Compared with children without birth defects, cancer risks were higher among children with a major birth defect in the fertile group (hazard ratio [HR], 3.15; 95% CI, 2.40-4.14) and IVF group (HR, 6.90; 95% CI, 3.73-12.74). The HR of cancer among children with a major nonchromosomal defect was 2.07 (95% CI, 1.47-2.91) among children in the fertile group and 4.04 (95% CI, 1.86-8.77) among children in the IVF group. The HR of cancer among children with a chromosomal defect was 15.45 (95% CI, 10.00-23.86) in the fertile group and 38.91 (95% CI, 15.56-97.33) in the IVF group. Conclusions and Relevance: This study found that among children with birth defects, those conceived via IVF were at greater risk of developing cancer compared with children conceived naturally.

Gastroschisis Trends and Ecologic Link to Opioid Prescription Rates - United States, 2006-2015.

Prevalence of gastroschisis, a serious birth defect of the abdominal wall resulting in some of the abdominal contents extending outside the body at birth, has been increasing worldwide (1,2). Gastroschisis requires surgical repair after birth and is associated with digestive and feeding complications during infancy, which can affect development. Recent data from 14 U.S. states indicated an increasing prevalence of gastroschisis from 1995 to 2012 (1). Young maternal age has been strongly associated with gastroschisis, but research suggests that risk factors such as smoking, genitourinary infections, and prescription opioid use also might be associated (3-5). Data from 20 population-based state surveillance programs were pooled and analyzed to assess age-specific gastroschisis prevalence during two 5-year periods, 2006-2010 and 2011-2015, and an ecologic approach was used to compare annual gastroschisis prevalence by annual opioid prescription rate categories. Gastroschisis prevalence increased only slightly (10%) from 2006-2010 to 2011-2015 (prevalence ratio = 1.1, 95% confidence interval [CI] = 1.0-1.1), with the highest prevalence among mothers aged <20 years. During 2006-2015, the prevalence of gastroschisis was 1.6 times higher in counties with high opioid prescription rates (5.1 per 10,000 live births; CI = 4.9-5.3) and 1.4 times higher where opioid prescription rates were medium (4.6 per 10,000 live births; CI = 4.4-4.8) compared with areas with low prescription rates (3.2 per 10,000 live births; CI = 3.1-3.4). Public health research is needed to understand factors contributing to the association between young maternal age and gastroschisis and assess the effect of prescription opioid use during pregnancy on this pregnancy outcome.

Comparison of web versus interview participants in a case-control study.

PURPOSE: To evaluate whether selection bias might be introduced because of differential self-selection into an internet-based case-control study. METHODS: We compared sociodemographic factors and behavioral factors for cases and controls who opted for their first entrée into the study be via the internet (Web group) versus the telephone (Phone group), using data from a study on clubfoot. RESULTS: Overall, 200 of 1,825 mothers were in the Web group and were more likely to be non-Hispanic White, nonsmokers, more educated, wealthier, and took ≥7 medications/vitamins in pregnancy. These differences were greater for case mothers, introducing the potential for selection bias. Maternal smoking is an established risk factor for clubfoot and was confirmed in the Phone group (OR = 1.61) but was not observed in the Web group (OR = 1.15). CONCLUSION: Our results suggest there is potential for selection bias if enrollment is solely internet based for a case-control study.

Priorities for future public health research in orofacial clefts.

The National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention conducted a workshop in January 2006, entitled "Prioritizing a Research Agenda for Orofacial Clefts." The goals of the meeting were to review existing research on orofacial clefts (OFCs), identify gaps in knowledge that need additional public health research, and develop a prioritized research agenda that can help guide future public health research. Experts in the field of epidemiology, public health, genetics, psychology, speech pathology, dentistry, and health economics participated to create the research agenda. Research gaps identified by the participants for additional public health research included: the roles of maternal nutrition, obesity, and diabetes in the etiology of OFCs; psychosocial outcomes for children with OFCs; the quality of life for families and children with OFCs; and the health care costs of OFCs. To create the research agenda, the participants prioritized the research gaps by public health importance, feasibility, and outcomes of interest. This report summarizes the workshop.