Integrating Consumer Perspectives in Newborn Screening: A Model Building Approach

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 workshop will discuss three different processes of consumer integration into NBS educational outreach, research, and future project development from. 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, parents who have experienced false positive screens and carrier identification. Furthermore, these projects establish relationships between health professionals and consumers, as well as engage underrepresented consumer audiences through divers 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.