OrganizationCommunity NeedEngagementAccessibility
Alpha-1 Foundation• The Alpha-1 community is very focused on understanding genetics
• Participated to determine if the booklets could prompt individuals in the Alpha-1 community to focus on genetic risks independent of Alpha-1
Recruitment through:
• Alpha-1 Foundation Research Registry
• Alpha-1 Association Education Days
and National Conference
• Letter to Alpha-1 Association Genetic Counseling Program participants
Added to booklets:
• Text and terminology specific to those with Alpha-1
• Stories about individuals with Alpha-1 and talking about their inherited condition with family members
Institute for Cultural PartnershipsBarriers to gathering FHH data:
• Privacy and discrimination concerns
• Lack of time, interest, perceived benefit
• Opposition from family
• Unwillingness or inability to read and comprehend written materials
Recruitment through:
Community liaisons
• Messaging that conveys the importance of mitigating genetic risk through lifestyle changes and generating a record of family risk that would benefit family members
• Prior awareness of the project
• Project pilot yielded stories and quotes
• Narratives and quotes matched with themes from the booklets
• Composite stories used
Intermountain HealthcareThis Integrated healthcare system has inpatient, outpatient and health plan coverage within one corporate structure.16 physicians (various types, practice sizes, locations) were interviewed to test whether the type of experience collecting FHH correlates with the usage.Added to booklets:
• Story on collection of genealogy
• Page on cystic fibrosis because it is a common autosomal recessive condition in Utah and was added to the state newborn screening panel
Iona CollegeThe project:
• Includes underrepresented individuals in an in-depth discussion about importance of healthcare
• Teaches faculty and students about assessment, intervention, and intergenerational learning
Outreach to a cross section of the student body through:
• Mass email
• Fliers posted in academic departments
• Word of mouth
• CAB provided quotes, stories, and photographs
• CAB did not recommend a specific disease for Book 2, since college students represent a broad cross section of the general population
National Council of La RazaLatinos are more likely to experience serious health conditions—hypertension, heart disease, high cholesterol, diabetes, certain cancers, and depression.Recruitment through:
• Network of ~300 affiliated community-based organizations
Promotores de salud
Three-step customization process:
1) CAB provided feedback
2) Promotores tested with their own families
3) Families tested toolkit and completed evaluation questionnaires
National Psoriasis FoundationPeople with psoriasis have:
• Elevated risk for psoriatic arthritis, diabetes, cardiovascular, liver, and Crohn’s disease and more
• Higher rates of smoking and excessive alcohol use
• Poor diet and exercise habits
• Recruitment through volunteer base of over 500 people across U.S.
• All first family members had (or had child with) psoriasis
Psoriasis patients represent a cross section of the general population, so many quotes and stories in templates were appropriate.
Office of Justice and Peace/St. Mary’s Health WagonChronic conditions prevalent throughout rural Virginia, partly attributed to lifestyle (“comfort food”, coal mining, lack of exercise).Most participants were recruited from the clinic patient base.• Included conditions with high prevalence in area
• Selecting stories and pictures was difficult because many patients had interesting stories to tell
Urban Indian Health Institute, Seattle Indian Health BoardUrban AI/AN:
• Are mobile (travel between reservations and urban areas), spread out
• Suffer from higher rates of tobacco use, infant mortality, late prenatal care, interpersonal violence, attempted suicide, deaths due to diabetes, accidents, and chronic liver disease
Recruitment through:
• “Snowball” recruitment
• Fliers distributed
• “Project Dialogues” with staff
• Toll-free number for project questions
• Unique role of storytelling, oral tradition in AI/AN culture
• Overview of historical trauma as relates to disease status
• Particular attention to relevant imagery

From: Demonstration Project

Cover of Community Centered Family Health History. Collaboration Across Communities
Community Centered Family Health History. Collaboration Across Communities: How Do You Make Research Community-Specific and Universally-Relevant?
Edelson V, Terry S, O'Leary J, et al.
Washington (DC): Genetic Alliance; 2010.
Copyright © 2010, Genetic Alliance.

All Genetic Alliance content, except where otherwise noted, is licensed under a Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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