Community Centered Family Health History Program Awards
In 2008, Genetic Alliance released an RFP for organizations to use an online tool to customize the Does It Run In the Family? toolkit, including “A Guide to Family Health History” and “A Guide for Understanding Genetics and Health.” Awardees used the toolkit within existing programs and initiatives to integrate conversations about family health history seamlessly into diverse communities across the country. The Award period ended in 2009, but partners will continue to use the family health history materials in their programs.
Angioma Alliance used the Does It Run In the Family? toolkit to educate a broad audience in New Mexico about the Common Hispanic Mutation, a form of cavernous angiomas traced to the original Spanish settlers of 1598. Angioma Alliance partnered with the city of Santa Fe and the state of New Mexico to distribute booklets through clinics, physicians, and public awareness events. They encouraged newly diagnosed and at-risk patients to become keystone family members who educate others. Click to see Angioma Alliance’s customized booklets: [book 1] [book 2]. Read the final report here.
Brookdale University Hospital Medical Center customized the Does It Run In the Family? toolkit to be used within one current program, a culturally competent and comprehensive system of care for those with sickle cell disease and trait, focused on increasing patient, public, and professional awareness of sickle cell disease. The toolkit was distributed to current patients, future referrals, parent support groups, and community outreach programs at the Brooklyn Public Library, school PTAs, faith-based institutions, and other local organizations. Click to see Brookdale’s customized booklets: [book 1] [book 2]. Read the final report here.
The Duke University Institute for Genome Sciences & Policy partnered with the Department of Employee Occupational Health & Wellness to incorporate the Does It Run In the Family? toolkit into the Duke Employee Health program, LIVE FOR LIFE, with the aim of advocating awareness regarding the value of family health history and encouraging its collection among employees. The customized family health history tools were implemented alongside established health promotion and disease prevention programs of in-person health assessments and web-based resources, thus enabling sustained promotion and accessibility of family health history resources for the benefit of the large, diverse Duke employee community. Click to see Duke’s customized booklets: [book 1] [book 2]. Read the final report here.
The Genomedical Connection partnered with congregational nurse programs and military reserve units to educate Guilford County, NC, residents about family health history through community presentations, health fairs, and more. One focus was on “kin keepers,” individuals in a family who spread news, arrange get-togethers, and otherwise promote solidarity and unity among family members. Click to see The Genomedical Connection’s customized booklets: [book 1] [book 2]. Read the final report here.
The Heredity Project, a genetic literacy project for the general public, partnered with staff and members of Curves-Midtown Memphis, TN, to customize the Does It Run In the Family? toolkit with stories collected from gym members. Curves is an international fitness franchise with a reputation for providing outreach to members to promote healthy lifestyle choices; Heredity Project used this novel partnership to garner local and national media coverage to promote awareness of the value of knowing one’s family health history. Click to see The Heredity Project’s customized booklets: [book 1] [book 2]. Read the final report here.
The Lesbian and Gay Family Building Project of the Ferre Institute, Inc. used the toolkit within their existing Family Health History Initiative to engage 300 LGBT families in the upstate New York area to determine what family history information, if any, they are collecting. Booklets were distributed to promote health awareness, and the services of a genetic counselor were offered to families who have questions during health history collection. Click to see Ferre Institute’s customized booklets: [book 1] [book 2]. Read the final report here.
Progreso Latino united multiple generations, cultures, and languages around family health history through its many program areas—Senior Citizen, Youth, Wellness—and social services, including English for Speakers of Other Languages (ESOL), GED, citizenship classes, and a bilingual preschool. The project culminated in a family health history celebration, including a play created by program participants, bringing together community members of all ages. Click to see Progreso Latino’s customized booklets: [book 1] [book 2]. Read the final report here.
Southern Missouri Telehealth Genetics Services used telehealth technology to bring family health history information to individuals without immediate access to a healthcare provider. In addition, SMTGS utilized its extensive telehealth network to reach out to partner groups in each region of southern Missouri, including libraries, home and garden shows, early childhood fairs, radio stations, and career enhancement scholars programs, to bring family health history discussion to audiences not traditionally focused on health. Click to see Southern Missouri’s customized booklets: [book 1] [book 2]. Read the final report here.
University of Oklahoma Health Sciences Center College of Medicine incorporated the Does It Run In the Family? toolkit into the College of Medicine curriculum to be used by medical students learning to take family medical histories and as an educational resource for their future parents. The Heartland Regional Genetics and Newborn Screening Collaborative will facilitate additional dissemination of the customized booklets. Click to see University of Oklahoma’s customized booklets: [book 1] [book 2]. Read the final report here.
West Side Community Health Services works with the Hmong population in and around St. Paul, MN. The toolkit was customized for the Hmong community to increase their knowledge about the relevance of family health history and genetics to health and clarify issues of heredity in a culturally competent manner for a group steeped in traditional ideas about inheritance and illness. Click here to see West Side’s customized booklets: [book 1] [book 2]. Read the final report here.