184819 Accessible family health history tools: A model and a resource

Monday, October 27, 2008: 1:15 PM

James C. O'Leary , Genetic Alliance, Washington, DC
Vaughn T. Edelson , Genetic Alliance, Washington, DC
Sharon F. Terry, MA, LHD , Genetic Alliance, Washington, DC
     
Significant stigma exists in communities and families surrounding health information. Privacy concerns and fears of discrimination within the family can make it difficult to discuss health. Yet the family plays an important role in shaping a person's habits and encouraging healthy behaviors. In addition, genes passed down through generations can be significant predictors of risk for developing a condition. For these reasons, discussing health history with your family can save your life. Community Centered Family Health History models how adaptation of materials and methodologies by communities in a national project can enhance family communication and health outreach, improve accessibility to health information, and increase sustainability of family health history initiatives. In this presentation, we review how communities in the project customized family health history materials and used varying recruiting methods for health outreach to families. Partners describe how we translated community experiences into a customizable online version of the 'Does It Run In the Family?' health history toolkit so that others can easily create community-specific resources. We also explore how a broad definition of community (people united by shared condition, race or ethnicity, geography, or religion) can help increase collaboration and provide unique access points to health information for individuals.

Learning Objectives:
1. Articulate the importance of family health history to individuals and families in the communities they serve in discussions beyond this session. 2. Learn new skills for making health educational initiatives accessible and sustainable in different communities. 3. Recognize and accept the broad applicability of the term “community.”

Keywords: Access, Community-Based Health Promotion

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I wrote, received, and have managed a three-year family health history grant that creates tailored family health history resources for diverse communities with the goal of increasing communication about health within the family and knowledge of what “runs in the family.” O’Leary, J.C., Terry, S.F., Kyler, P., Lloyd-Puryear, M., Family History Tools for Underserved and Underrepresented Communities. (Poster), Amer Soc of Hum Genet (2005) O’Leary, J.C., A National Perspective on Family Health History: Bridging the gap between national and regional family health history initiatives. (Presentation), Heartland Genetics and Newborn Scr. Collaborative (2006) O’Leary, J.C., Williams, J.L., Taualii, M., Kyler, P., Terry, S.F., Community Accessibility of Family Health History Tools. (Poster), Amer Soc of Hum Genet (2006) O’Leary, J.C., Bonhomme, N., Collecting Family Health History. (Presentation), Family Voices National Conference (2007) O’Leary, J.C., Bonhomme, N., Williams, J.L., Williams, M.S., Kyler, P., Terry, S.F., Community Centered Family Health History. (Poster), Amer Soc of Hum Genet (2007)
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.

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