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Family History Demonstration Projects

Program Overview

As part of its mission, the Education and Community Involvement Branch (ECIB) seeks to create models of dissemination of genetic and genomic health information to the public. ECIB has identified efforts to inform communities about the Surgeon General's Family History Tool as a priority area. To this end, ECIB has funded a series of Family Health History Demonstration Projects whereby community based organizations and academic institutions are tasked to create a model education program and supportive materials to educate and engage a community about the use of Family History in health care.

The objectives of the Family History demonstration projects include:
  • Increase awareness of the importance of family history information in health care in a health care community (both consumers and health professionals).
  • Develop and implement methods to engage audiences using online, print or distance learning materials.
  • Educate community on how to access the Surgeon General's Family History tool electronically.
  • Educate community on how to collect family history information (including how to engage other family members in the collection).
  • Educate health care providers on how family history information can be used in health care setting.
  • Develop a model that can be applied to other communities educating health care users and health professionals about Family History.
  • Evaluate materials and methods created.
  • Disseminate findings nationally.

Ongoing Projects

Completed Projects

Developing Community Based Models for Education and Utilization of Family Health History Information: A Demonstration Project in Urban Appalachian Communities

Institution: University of Cincinnati

The University of Cincinnati is currently working with the Greater Cincinnati/Northern Kentucky and metropolitan Dayton Urban Appalachian populations (the target population or community) to engage and educate them about family health history. Specifically, 100 women over the age of 18 from the urban Appalachian populations in the Greater Cincinnati and Dayton metropolitan areas are being recruited through participating community organizations to participate in two education sessions about the importance of family history. Collaborators include the University of Cincinnati College of Allied Health Sciences and The Department of Environmental Health, the Cincinnati Children's Hospital Medical Center Division of Human Genetics, the Appalachian Outreach/Studies at Sinclair College, Dayton, Ohio, the Area Health Education Health Literacy Program at The Ohio State University, and several local community organizations

  1. Develop and disseminate low literacy educational materials about the importance of family health history information in promoting health and preventing disease.
  2. Educate the target community about how to collect family history information (including how to engage family members in the collection) and how to access and complete the Surgeon General's Family History Tool.
  3. Increase awareness about the importance of family health history information among health professionals working in health clinics in the targeted areas.

Low literacy family health history materials have been developed after holding two focus groups of 8-10 participants and pilot testing the materials with the target population. These materials will be used to educate the target population about the importance of family health history in preventing disease during two education sessions and will be applicable to other low-literacy populations. Participants will also learn how to record their family health history using the Surgeon General's family history tool "My Family Health Portrait" during the education sessions. The completeness of collected family health information will be evaluated.

University of Cincinnati Family History Demonstration Final Report

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Southcentral Foundation Family Health History Project

Institution: Southcentral Foundation, Anchorage, Alaska

The overarching goal of the project is to develop tools and methods for creating a common understanding among Southcentral Foundation's staff about the role and importance of family health history as it relates to the prevention of illness. An educational module will be created and used to increase knowledge of the importance of family health history among employees. This educational module will emphasize cultural relevance to reflect Southcentral Foundation's cultural diversity. In addition to the educational module, a video highlighting Native leadership in the Anchorage community and family health special events will be created.

  1. To develop planning and outreach methods to engage Southcentral Foundation's employee population about the role of the family health history throughout the project period.
  2. To engage the employee population and build awareness of the role of family health history.
  3. To develop replicable products by the end of the project period relating to family health history and the usefulness of collecting family health history.
  4. To conduct focus groups: two with Southcentral Foundation-based providers and two for employees to:
    1. To assess employee and provider views/experiences of family health history.
    2. To determine employee and provider input on ways to address any barriers to gathering family health history.
    3. To get guidance from employees and providers on the best material and tools to use for family health history education
  5. To evaluate the educational module using a post survey; testing the quality and usefulness of the educational module.

This family history project was made possible with funding from the National Center for Minority Health and Health Disparities.

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Brigham and Women's Hospital Family Health History Project

Institution: Brigham and Women's Hospital (BWH), Boston

The BWH Family History Project, organized by the newly formed BWH Biomedical Research Institute's Center for Integrative Genetic Medicine, gave BWH employees the tools to voluntarily collect and organize, for their own private purposes, a family health history, with a level of detail that is usually not included in the medical record. The integration of family medical history into medical care can assist health care providers in making informed decisions about screening tests and preventive measures that could save lives.

The BWH Family History Project evaluated the obstacles to gathering family medical histories and sought an understanding of what patients and providers do with the family medical history information, evaluating how it can best assist in patient care. Furthermore, this project helped to build the educational and information technology infrastructure needed to improve this area of health care.

  1. To provide extensive educational support and to make available the necessary tools to all hospital employees who can then make a voluntary decision to participate in the Family History Project.
  2. To identify the obstacles to participation.
  3. To evaluate feedback strategies for both "users" and "providers."

As part of this demonstration project, BWH translated the Surgeon General's Family Health Portrait into five languages based on prevalence among the employee population: SpanishPDF file, French PDF file, PortuguesePDF file, ChinesePDF file and PolishPDF file. These translations are also available at Brigham and Women's Hospital Family Health Tools [].

For more information, visit: Family History Project []

Brigham and Women's Hospital Family Health History Project

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Developing a Community-Driven Model to Mobilize Latino Communities around Genetics Information

Institution: National Council of La Raza

The National Council of La Raza's Institute for Hispanic Health (NCLR/IHH) and the National Institutes of Health's National Human Genome Research Institute (NHGRI) and Office of Rare Diseases Research (ORDR) established a one-year partnership to develop effective ways to reach Latino communities with information about genetics and rare diseases.

The overall objectives of the project were:
  1. To increase awareness among Latinos of the importance of genetics information and implications of this science for their health and the health of their families and community.
  2. To improve Hispanics' understanding about genetic and rare diseases and to increase knowledge of how to access appropriate genetic services.
  3. To promote Latino community participation in health care policies, to improve the quality of, and access to, health care for genetically-related diseases.

NCLR/IHH applied a field-tested formative research methodology to: 1) assess what Latinos knew about genetics; 2) assess how comfortable they felt talking and learning about this topic; 3) understand their perspectives; 4) identify rumors or misconceptions about genetics; and 5) uncover barriers to learning more about genetics, as well as explore most appropriate ways to educate and inform Latinos and other people like them on genetics and rare diseases.

The formative research conducted for this project established a basis to develop a culturally- and linguistically-sensitive training module that was used by the two partner community-based organizations (CBOs) involved (La Clínica de la Raza in Oakland and La Clínica del Pueblo in Washington, DC) with the goal of providing access to information and education to the Latino population on genetics and rare diseases.

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Last Updated: March 25, 2014