Transcript Increasing Genetic Literacy in Underserved Populations to

The CGEN Project: Development,
Implementation and Testing of
Genetics Education Materials for Use
in Community and Clinical Settings
National Coalition for Health Professional
Education In Genetics
Bethesda, MD
September 23-24, 2009
What is the Community Genetics
Education Network (CGEN) Project?
• Collaborative agreement between March of Dimes and Health
Resources and Services Administration (HRSA)
• Identify most effective ways to increase genetic literacy
among diverse minority populations and determine best
practices
• Uses principles of community-based participatory research
• Evaluation component for process, implementation, and
outcomes
• Four community partners developing and implementing
population-specific genetics education programs
What is the goal of CGEN?
Goal: To increase genetic literacy in underserved populations by
 Facilitating the use of family health history to identify
genetic risks
 Enhancing health care decision-making
 Encouraging consultation with health care providers
 Empowering individuals to address modifiable risk factors
 Increasing utilization of genetic services
Who are the partners ?
Community Site/Local Evaluator
• Charles B. Wang Community Health Center/Charles B.
Wang Community Health Center
• Dominican Women’s Development Center/Jesus Sanchez
• Howard University, Department of Community and Family
Medicine/Green Consulting
• Genetic Science Learning Center at the University of Utah,
in partnership with Utah Department of Health’s Chronic
Disease Genomics Program/Bach Harrison LLC
National Evaluator: Midwest Latino Health Research, Training
and Policy Center at the University of Illinois at Chicago
How were the community partners
selected?
Requirements
• Conducted local needs assessment
• Understanding of what and how
community would like to learn
• Connections to and within community
and ability to organize a Community
Advisory Board
What are the community
partners doing?
Charles B. Wang Community Health Center
• 5 Chinese/English brochures
• 2 Korean/English brochures
• Workshop curricula to train health educators
• Genetics education workshops for high risk
prenatal patients prior to meeting with Genetic
Counselor
Dominican Women’s Development Center
• Training curriculum for Community Health
Workers (CHW)/Promotoras
• Community-Based Genetics Education
Workshops
• Bilingual English and Spanish
Community partners
(continued)
Howard University
• Community workshops
– 2 interactive booklets
– Trigger video on family health history
• Website and toll free number
Genetic Science Learning Center with
Utah Dept. Of Health
• 5th grade curriculum materials and take home
activities
• Secondary school materials and take home
activities
• Bilingual English and Spanish
• Community workshops for Pacific Islanders
(Tongans)
How do we know if we’ve
achieved our goals?
Process and Implementation
Evaluation
Outcomes Evaluation
• Planning and development, and
implementation phases
• Extent to which program
participants experience the benefits
or changes intended
• Document extent to which
community participation and input
is maximized
• Outcomes may relate to behavior,
skills, knowledge, attitudes, values,
or other attributes
• Verify if the program is
implemented as planned
• Ensure program is reaching target
audience
What have we learned so far about
community participatory approaches?
Five factors appear to have significantly impacted the degree to which each site
engaged community members in planning and development processes:
1. each site’s definition of community;
2. each site’s history of engaging community members in program
planning and development, and implementation;
3. each sites expertise in community outreach
4. the goals or purpose of a particular project;
5. dimensions of culture that facilitated or constrained community
involvement
“Dimensions of culture that facilitated or constrained community involvement
included the cultural values, beliefs and practices of the primary community as
well as those of the sponsoring organization.”
Source: The Midwest Latino Health Research, Training & Policy Center, University of Illinois at Chicago,
Process Evaluation: Planning and Development Phase Consumer Genetics Education Network (CGEN) Project:
Successes and Challenges, Draft 1/1808
What were some of the overall
challenges?
• Variation in experience with partnerships and levels of
expertise
• Participatory process requires long period of time
• Variation in settings impacted approaches to
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Decision-making
Staffing and staff turnover
Use of consultants
Capacities of internal infrastructure to respond and adapt to
project demands
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What were some of the specific site
challenges?
• Scope of deliverables
• Resources constraints
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Translation
Necessary expertise
Staff turnover
Crosswalk to organization’s strategic plan
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What are some elements that
contributed to success?
• Participatory Approach
• Community Participation
• Project Oversight/Support
– Communication systems
– Training
– Technical assistance
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What are some lessons learned?
• No one way of conducting CBPR
• Genetics education requires partnerships with diverse groups at local and
national level
• Requires long term commitment from funding sources and partners
• Community engagement is continuous and evolving relationship with a
bi-directional information exchange
• Grassroots approach is a method to empower and build capacity in
communities
• High level of communication, trust and collaboration is essential to
effectively engage community gatekeepers and stakeholders
• Community ownership ensures that information gathered reflects their
needs
What are our results so far?
Preliminary results :
• Community engagement has occurred
• Broad based dissemination through a variety of formats
has occurred
• Increased basic knowledge of genetics
• Understanding the importance of knowing and
documenting family health history
• Intent to
• Create a family health history
• Discuss family health history with health provider
• Adopt healthier behaviors
For more information
Diane Gross
914-997-4612
[email protected]
www.marchofdimes.com/genetics
Acknowledgements
This project is supported by grant U33MC00157 from the Health Resources and
Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.
Partners in the Consumer Genetics Education Network (CGEN) include