Programs and Policy 2011 Challege Award Projects

2011 Challenge Award Projects

March of Dimes- As part of its ongoing “Healthy Pregnancy, Healthy Babies” series, March of Dimes has developed and produced a 2.5 minute video vignette in English and Spanish depicting an obstetrician discussing newborn screening with her patient in a prenatal office visit setting. The video was released on YouTube as well as the March of Dimes and Baby’s First Test websites. March of Dimes and Genetic Alliance are coordinating social media activities to support the dissemination of the online videos. Next steps for this project include pressing and disseminating a DVD collection of prenatal education videos that includes the newborn screening video.

Hawaii Department of Health- During summer 2011, the Hawaii Genetics Program assessed online health information-seeking behaviors of attendees at the Hawaii Baby Expo (a gathering of diverse consumers interested in prenatal to preschool issues, products, and information) and patients at Hawaii Women, Infant, and Children (WIC) clinics. Surveys were completed via iPad or paper. Results suggest that the internet can be effectively used to disseminate accurate NBS information, particularly if the NBS Clearinghouse website is developed in a way that maximizes visitors. The Hawaii group then performed usability testing on Baby's First Test with another diverse population group.

New York Mid-Atlanatic Consortium- NYMAC facilitated a childbirth educator meeting in Baltimore, MD. Twenty-four doulas, nurse-midwives, and childbirth educators from all of the NYMAC states except Delaware attended the meeting. For the toolkit, the participants agreed that having a wide range of resources on newborn screening in one place that they could access would be helpful. About 2/3 of the participants agreed to participate in a pilot of these resources with their respective patient populations. Participants also agreed to continue working with NYMAC as a specific interest group focused on educating childbirth educators. The toolkit is available here.

Association of Public Health Laboratories- APHL utilized social media to increase awareness of newborn screening. Specifically, they launched newborn screening twitter and Facebook accounts, held twitter chats, produced videos highlighting key figures in the newborn screening community, produced a brochure on newborn screening, and launched a website dedicated to furthering information on newborn screening. They will continue to promote newborn screening awareness by reaching out to their partners through social media connections and helping to facilitate production of a video detailing the laboratory process of newborn screening.

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