The CGEN Project: Development, Implementation and Testing of Genetics Education Materials for Use in

1
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

2
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

3
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

4
Who are the partners ?

• Community Site/Local Evaluator
• Charles B. Wang Community Health Center/Charles
  B. Wang Community Health Center
• Dominican Womens 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
  Healths Chronic Disease Genomics Program/Bach
  Harrison LLC
• National Evaluator Midwest Latino Health
  Research, Training and Policy Center at the
  University of Illinois at Chicago

5
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

6
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 Womens Development Center
• Training curriculum for Community Health Workers
  (CHW)/Promotoras
• Community-Based Genetics Education Workshops
• Bilingual English and Spanish

7
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)

8
How do we know if weve achieved our goals?

• Process and Implementation Evaluation
• Planning and development, and implementation
  phases
• Document extent to which community participation
  and input is maximized
• Verify if the program is implemented as planned
• Ensure program is reaching target audience

• Outcomes Evaluation
• Extent to which program participants experience
  the benefits or changes intended
• Outcomes may relate to behavior, skills,
  knowledge, attitudes, values, or other attributes

9
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
• each sites definition of community
• each sites history of engaging community members
  in program planning and development, and
  implementation
• each sites expertise in community outreach
• the goals or purpose of a particular project
• 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
10
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
• Decision-making
• Staffing and staff turnover
• Use of consultants
• Capacities of internal infrastructure to respond
  and adapt to project demands

10
11
What were some of the specific site challenges?

• Scope of deliverables
• Resources constraints
• Translation
• Necessary expertise
• Staff turnover
• Crosswalk to organizations strategic plan

11
12
What are some elements that contributed to
success?

• Participatory Approach
• Community Participation
• Project Oversight/Support
• Communication systems
• Training
• Technical assistance

12
13
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

14
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

15
For more information

• Diane Gross
• 914-997-4612
• dgross_at_marchofdimes.com
• www.marchofdimes.com/genetics

16
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