4117.0 Integrating Consumer Perspectives in Newborn Screening: A Model Building Approach

Tuesday, November 10, 2009: 10:30 AM
An integral part of public health is building communication lines with those affected by health initiatives. As newborn screening programs around the country expand, this initiative touches more families then ever before. It is important for a range of consumer perspectives to be integrated into the newborn screening dialogue. This session will discuss three different processes of consumer integration into NBS educational outreach, research, and future project development. These partnerships were achieved through establishing open lines of communication among parents, advocates, and health professionals. These activities include members representing communities that either historically have not participated in newborn screening programs or whose concerns have not been fully addressed, such as Sudanese refugees, Amish, adoptive and foster families, parents with uneventful newborn screens, and parents who have experienced false positive screens or carrier identification. Furthermore, these projects establish relationships between health professionals and consumers, as well as engage underrepresented consumer audiences through diverse communication styles. These projects also increase consumer participation in newborn screening discussions both at the state and national level. Communication strategies will be developed based upon the important insights provided by community members and health care providers. This session will explore these new partnerships and emphasis the importance of sharing information with consumers and integrating their perspectives throughout the establishment of health initiatives.
Session Objectives: Participants will be able to Compare and contrast different methods to integrate consumers into newborn screening Discuss importance of sharing information with consumers
Penny Kyler, ScD, OTR, FAOTA

10:30 AM
Integrating Consumer Perspectives in Newborn Screening: A Model Building Approach
Natasha Bonhomme, Kirsty McWalter, MS, CGC, Sara Copeland, MD, Janet K. Williams, PhD, RN, FAAN, Kimberly Noble Piper, RNC, CPH, CPHG, Sharon F. Terry, MA, LHD and Sylvia Mann Au, MS, CGC

See individual abstracts for presenting author's disclosure statement and author's information.

Organized by: Maternal and Child Health