OUTREACH AND RECRUITMENT ACTIVITIES IN SUPPORT OF THE PREGSOURCE ONLINE REGISTRY PROJECT

Palladian Partners, Inc., Silver Spring MD

Investigators

Abstract

The Eunice Kennedy Shriver National Institute of Child Health and Human development (NICHD), one of the 27 Institutes and Centers of the National Institutes of Health (NIH), leads the federal government in conducting and supporting research on all aspects of pregnancy, including short- and long-term health outcomes of pregnancy and pregnancy complications. Even though women have been getting pregnant and having babies for millennia, there is still a lot we don?t know about pregnancy and childbirth. And what we do know is often not enough to improve outcomes for mothers, infants, and families. Consider the following: ? Maternal mortality rates in the United States1 are among the highest in the developed world, equal to or worse than rates in some developing countries. ? According to the Centers for Disease Control and Prevention (CDC), pregnancy-related deaths2, defined as deaths that occur during or up to a year after pregnancy or delivery, are mostly preventable. ? Considerable racial and ethnic disparities persist in U.S. maternal mortality rates3, with non-Hispanic black women dying at rates more than three times that of white women. Similar disparities are present in rates of maternal morbidity. ? NICHD-funded research shows that known risk factors account4 for only part of the United States? increase in life-threatening childbirth complications and that rates of these complications have increased5 dramatically in certain racial and ethnic groups. ? Certain pregnancy complications and conditions are known to influence the later health of the mother. For example, women who have preeclampsia during pregnancy are at increased risk for cardiovascular disease, including high blood pressure, later in life. Women who had gestational diabetes are at nearly double the risk for type 2 diabetes in their lifetimes. ? Certain pregnancy complications and conditions can also have short-and long-term effects on the health of the offspring. For instance, the children of women who had gestational diabetes are at higher lifetime risk for type 2 diabetes than children whose mothers did not have gestational diabetes. And, the children whose mothers had gestational diabetes during their pregnancy are more likely to develop type 2 diabetes at younger ages than their peers whose mothers did not have the condition. ? We are only just beginning to understand the human placenta, its overall functions, and the mechanisms of how it protects the fetus from infection and toxins. These and other research findings and health statistics formed the rationale for PregSource®: Crowdsourcing to Understand Pregnancy. PregSource aims to collect normative data about pregnancy directly from pregnant women through an online platform. Women can complete the online surveys 24/7, from any location that offers Internet connectivity. Participants can complete various health questionnaires online, can track their pregnancy progress (e.g., weight, physical activity, mood, physical activity, and nausea), and can access pregnancy health information from PregSource partners?about 20 of the leading pregnancy and health-focused organizations, including the American College of Obstetricians and Gynecologists, Lamaze International, and the March of Dimes. NICHD and its partners did a soft launch of PregSource from October through December 2017, followed by a formal launch starting in January 2018. Although initial statistics showed solid performance during the soft launch and the beginning of the formal launch, enrollment quickly declined. For several months in 2018, NICHD worked with BabyCenter.com to run ads and raise awareness about PregSource; the results were positive in terms of engagement, but did not generate the enrollment that was hoped. NICHD has created social media content and graphics related to PregSource and has shared these materials with partners for them to share with their audiences. NICHD posts multiple times on social media each month to spread the word about the registry. We also created a promotional video to help increase interest. NICHD has also been working to translate the PregSource website, promotional materials, and surveys into Spanish, and to identify Spanish equivalents of partner items in the current PregSource Resource Library to accommodate a Spanish version of PregSource. This effort included focus groups, literature searches and environmental scans, and other activities related to understanding the needs/norms of Spanish speakers. At the same time, NICHD has been moving forward with developing a scaled-down app version of PregSource, to be available first in English and, later, in Spanish. Although NICHD and its partners have dedicated time and resources to raising awareness and encouraging enrollment, the enrollment numbers remain low. In addition, the characteristics of PregSource enrollees is skewed, with highly educated middle- to upper-class white women comprising the largest group of enrollees. We believe that PregSource would benefit from dedicated attention and resources specific to recruitment communications geared toward diverse audiences. This contract will enable NICHD to fund dedicated tasks and efforts to increase enrollment in PregSource, as well as improve the diversity of its participants (herein referred to as ?increasing diversity in PregSource). NICHD needs a contractor with the appropriate communications expertise and prior experience to increase enrollment and diversity in PregSource. Some communications will focus on raising awareness about PregSource and building community trust surrounding PregSource, especially among diverse audiences, but the overarching goal of this SOW is to increase enrollment in PregSource.