206198 Integrating Consumer Perspectives in Newborn Screening: A Model Building Approach

Tuesday, November 10, 2009: 10:30 AM

Natasha Bonhomme , Genetic Alliance, Washington, DC
Kirsty McWalter, MS, CGC , Hawaii Genetics Program, Honululu, HI
Sara Copeland, MD , Department of Pediatrics Divison of Medical Genetics, University of Iowa Children's Hospital, Iowa City, IA
Janet K. Williams, PhD, RN, FAAN , College of Nursing, University of Iowa, Iowa City, IA
Kimberly Noble Piper, RNC, CPH, CPHG , Center for Congenital and Inherites Disorders, Iowa Department of Public Health, Des Moines, IA
Sharon F. Terry, MA, LHD , Genetic Alliance, Washington, DC
Sylvia Mann Au, MS, CGC , Genetics Program, Hawaii Department of Health, Honolulu, HI
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.

Learning Objectives:
Describe current newborn screening issues facing a spectrum of stakeholders within NBS and other genetic and public health services. List ways to increase involvement of consumers and health professionals in the newborn screening systems. Describe how models of community engagement can be incorporated into program implementation within health systems.

Keywords: Community Participation, Patient Perspective

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I oversee two of the projects that will be presented as part of this session. I also oversee newborn screening initiatives at Genetic Alliance. I have a degree in psychology and work on a number of committees focused on public health and genetics.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.