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MCHB/DSCSHNJune 2005 Webcast
GENE Project
Penny Kyler
Genetic Services Branch
Moderator
Background Of The GENE Project
• The Genetic Education Needs Evaluation (GENE) Project was a five-year initiative aimed at improving access to genetics information.
• Launched in June 2000, managed by the March of Dimes under a cooperative agreement with the Maternal and Child Health Bureau, Division of Genetic Services of the Health Resources and Services Administration
Why the GENE project?
• Statement of the Problem– Advances in genetics have created new opportunities
for improvements in health care and new challenges for learning.
– Public awareness of and knowledge about genetics as it affects their health care decision making processes is low.
– Individuals may not be making the most informed health care decisions.
Why the GENE project?
Statement of the Problem
Motivated individuals—those who have a known genetic condition in their families—often have difficulty accessing and understanding the information.
– Information may not be culturally and linguistically appropriate for all individuals.
– The challenge is in knowing what information consumers need and how to best provide the information, given the complexity of the subject and barriers to communication.
Speakers for Today’s Webcast
• Aida Giachello, Ph.D.: Consultant to the March of Dimes
• Maria Zoquier :Project Coordinator, WH/I GENE Coalition
• Othelia Pryor, Ph.D,: Project Coordinator MI Gene Project
• Teresa Doksum, Ph.D.: Project Evaluator, Abt Associates
Community-based Participatory Action Research: The Genetic Education
Needs Evaluation
(GENE) Project
Aida L. Giachello, Ph.D.Associate Professor and Director
Midwest Latino Health Research Training and Policy Center
University of Illinois at Chicago (UIC)
& Consultant, March of Dimes GENE Project
312413-1952
[email protected], [email protected] Presentation at HRSA webcast, June. 23, 2005
Objectives of Presentation
• To briefly describe the Community-based Participatory Action Research methodology that guided the work of one of the GENE project community demonstration projects
The GENE Project: Vision
• The long-range vision of the project was to create a collaborative network for the development and dissemination of culturally appropriate human genetic information that will assist individuals in making informed choices about health
The GENE Project Overall Goals
• To develop a model of community-based participatory consumer genetics education in partnership with populations who are underserved and under represented
• To strengthen existing national and local partnerships that will help to sustain, replicate and disseminate the model
The GENE Project (cont)
• In effort to achieve these goals, HRSA and March of Dimes have partnered with community-based organizations to engage in community genetics demonstration projects
• The selected communities are:– Washington Heights/Inwood, New York
City– Flint and Lansing, Michigan
Community-Based Participatory Action Research (CPAR)
• Refers to a family of research methodologies that pursues research objectives (increased knowledge, understanding about a given problem), with active community participation and with the ultimate goal to engage in some immediate action
• CPAR tends to involves ordinary people in the research process (e.g., from the formulation of the research problem, instrument development, data collection, analyses and write-up/ dissemination of the findings)
• Seek solutions to community problems through partnerships /collaborations
• • Emphasis is on community engagement and mobilization
CPAR: Potential stakeholders to be mobilized in the area of genetics
• Persons directly affected by the problem (with a genetic-based condition)
• Parents, spouses and significant others• Health care providers• Schools & other health and human services
organizations• Faith communities• Policy-makers• Local, national consumer organizations• federal government
Key in CPAR
• Consciousness-raising among community residents and other stakeholders that leads to a state of readiness that can be enhanced through leadership development
• Residents become effective agents of social change
Key in CPAR (cont)
• Provides the opportunity to benefit the community with programs or services
• It institutionalizes activities in the community• It embraces personal and community
empowerment as a:– Philosophy– Process– outcomes
Differences between traditional/Academic & Community
Participatory Action Research (PAR)
Traditional/Mainstream• Rigid• No or limited community
participation• Researchers and/or
funders are in control• The project ends when
assessment/research has been completed and/or funding has ended
• Partnership with community is not based on an equal bases
PAR• Flexible• There is a great deal of
community participation• There is shared
governance. • The real action starts
when data is analyzed and the community has ownership
• Researchers/funders share financial resources, provides jobs opportunities, TA and training
Why Focus on Minorities and Under-served communities?
• In 2000, minorities represented 29% of the US population
• Recent research has provided evidences of social and health disparities
• There is limited research and data on these populations related to genetics in general and genetics education, in specific
CommunityOrganizing &
Coalition-Builing
Genetics101 & 201
AppliedResearchMethods
Analyses ofEpidemiology
Data
Focus Groups
CommunitySurvey
ResourcesNeeded
Strengths &Limitations
StrategiesFormation of
WorkingCommittees
CommunityForum &
Town Meeting
DevelopGoals &
Objectives
EstablishCommunity
ActionCoalition
Strengthening
Orientation
Assessmentof Community
Resources
CommunityInvolvement
ProblemDefinition
6Develop
Action Plan(Logic Model)
5Dissemination
of Findings
4Data Collection
& Analysis
3CapacityBuilding
(Training)
2Coalition
Formation
1Community
Entry &Engagement
Evaluation
Phase I: Participatory Action Research & Coalition Building Model
ACTIVITIES
PROCESS
Figure 1
Giachello et al, 2003, Journal of Public Health Reports. 118(4),
Chart 2Proposed Overview
of Activities
WH/IGENE
Coalition
WH/IGENE
Coalition
BuildingCommunity
Capacity thrutraining
BuildingCommunity
Capacity thrutraining
Community & SystemChange
Community & SystemChange
CommunityAwareness campaign
EducationProgram
CommunityAwareness campaign
EducationProgram
Individual/familyeducation
Individual/familyeducation
Understanding Context,Causes, & Solutions
aroundgenetics
Understanding Context,Causes, & Solutions
aroundgenetics
Action Planning(Logic Model)
Action Planning(Logic Model)
Other Sectors (e.g., school System)
Other Sectors (e.g., school System)
Health CareSystem
(Access to GeneticServices; cultural
competency)
Health CareSystem
(Access to GeneticServices; cultural
competency)
Lifestyles/Protective Behaviors
Lifestyles/Protective Behaviors
Health & Human services provider
training
Health & Human services provider
training
Community
Interventions
Community
Interventions
CommunityActionPlan
Implementation
CommunityActionPlan
Implementation-Partnership formation-Capacity Building-Training- Inter-group Relations
-Partnership formation-Capacity Building-Training- Inter-group Relations
Phase I Phase II
( on-going )
(On-going )
Summary of the benefits of CPAR
• It has provided the community with the opportunity to understand and to address genetic issues
• It allowed the community to develop structure to sustain the work in the area of genetic
• Has created among coalition members social capital by strengthening relationships and collaboration
In Building partnerships with communities, what communities
want?• Respect• Equal Partnership (including
sharing resources)• Active and meaningful participation
in all aspects of the project, from planning to implementation
• Job opportunities
In Building partnerships with communities, what communities want? (contd.)
• Training & technical assistance
• Acknowledgments of their Expertise (e.g., culture, community)
• Co-ownership of the data
Conclusions• There is not a specific way of conducting
community based participatory action research. It depends on the community in question, its leadership and the approaches taken in establishing partnerships and trust
• Focusing on genetic education requires partnerships with diverse audiences at the local and national level. It requires long term commitment from funders
Representatives from Washington Heights GENE Coalition
WH/I GENE Coalition Consumer Genetics
Education Needs and Assets Assessment
Survey Goals & ObjectivesCommunity To document:• genetic knowledge, attitudes and behaviors
access, availability, affordability of
• linguistically and culturally appropriate health care services and information in targeted community
• Community and health professional education and training needs
Study Methodology: Survey
• The Community Needs/Assets Committee of the WH/I GENE Coalition developed the questionnaire that was then approved by members at large
• A total of 407 face-to-face interviews were conducted by trained bilingual interviewers from January-March, 2004
Study Methodology: Focus Groups
Four focus groups were conducted with:
• Health care providers • Latino Parents (conducted in Spanish)• Latino Elderly (conducted in Spanish)• African-Americans & Non-Latino Whites
Summary of Preliminary Findings
Characteristics of Survey Respondents
274 Latino, 54 African-Americans, 79 Non-Latino Whites
58% Male
24% in Fair/Poor Health (self reported)
30% of Latino & African Americans vs.17% of non-Latino Whites reported no regular source of care
WH/I % of Respondents Who Reported Having An Inherited
Condition by Ethnicity
S o u r c e :M O D / W H I :W H / I C o n s u m e r G e n e t ic s E d u c a t io n S u r v e y , 2 0 0 4
C h a r t 2 .2W H /I : % o f R e s p o n d e n ts w h o r e p o r te d h a v in g a n
in h e r i t e d c o n d i t io n s b y E th n ic i ty , 2 0 0 4
34.6 31.9 15 31.1
26.6 29.1 17.7 45.6
31.5 29.6 14.8 40.7
37.6 33.2 14.2 28.1
0% 20% 40% 60% 80% 100%
Total
Non-LatinoWhites
AfricanAmerican
LatinoHim/Her self
Relative(s)
Friend(s)
No
Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004
Knowledge of Genetics
46% said they had a poor understanding of genetics
21% had never hear about genetic testing or screening
13% were not sure how genetic traits are transmitted
Genetic Knowledge: % of Correct Answers
0 20 40 60 80 100
Genes are instructions
Genes are made of DNA
Genetic diseases make you sick
Down's Syndrome is passed to children
Genetic diseases are contagious
Never heard about DNA
%
Latino
AfricanAmerican
Non-LatinoWhites
Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004
Community Residents’ Topics of Interest in Genetics
Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004
0 10 20 30 40 50 60 70 80 90 100
%
Genetics
Role of genetics in health
How genetics impacts my life
Link genetics & diabetes
Link genetics & asthma
Link genetic & cancer
Newborn screening test
Total Non-Latino Whites African American Latino
Interest in Additional Information About Genetics & the Coalition
13.0
46.7
1.324.1
7.429.6
17.556.6
0 10 20 30 40 50 60
%
Total
Non-LatinoWhites
AfricanAmerican
LatinoWant moreinfo. aboutgenetics orWHI
Interested injoining WHI
Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004
Focus Groups: Major Themes
• Among the consumers who participated in the focus group, they exhibited low levels of knowledge about genetic testing and genetic related conditions. For example, a participant said: ““Say that my uncle drank all his life so his sperm count was low so when his child was born slow…you know something that passed to the child because of his father’s genes or his grandfather’s genes.”
During the provider’s focus group, providers express additional interest about learning about the community’s culture such as: consumers’ experiences with official documentation, religious believes, fear and so forth. “I think that religious and cultural factors are part of their consideration, but I don’t think they are the sum of it.”
• “What I find sometimes is a culture of the older generation saying either that they get a needle stuck or that you are going to puncture the baby…The other day, the woman was crying and she was seventeen and she was crying and I said ‘What’s wrong?’ and the boyfriend said ‘Is like the way my mother said ‘Don’t do this’ or my grandmother said ‘Don’t do that.’ So here we are with all these things to help them and they’ll go home and discuss this with the parent or the other family and right away you stop and you’re stuck”.
Next Step/Action Plan
Based on the needs and assets assessments, the following priority areas have been identified:
a. Community awareness and education
b. Training activities aimed at health care providers and health promoters
c. Other priorities areas such as recruitment and retention of coalition members
Representatives from the MI Gene Project
What African Americans Need
To Know About Genetics
41
Project Goals1. Engage African Americans in community
discussions on issues related to genetic information and services
2. Identify barriers preventing national and state genetic organizations from effectively interacting with African American community
3. Recommend strategies to eliminate the barriers and increase access to genetic information and services
4. Develop community driven model to disseminate information that addresses community's genetic needs
MI GENE Project Partners
Needs Assessment • Qualitative-Community dialogue sessions
– CBOs hosted sustained conversation series
– 3-4 sessions of 1 ½ to 2 hours in length
– Total of 22 sessions
• Quantitative-MI GENE Project Survey
– 50 Likert scaled and open-ended items
– Demographic, genetic/health information sources, access to
genetic services, genetic knowledge/attitudes, funding priorities
• 151 participants
Community Dialogue Process
Community Based Organizations
Information flow
Demographic Information• Gender– 70% Female
– 30% Male
• Education– 52% Advanced degrees
– 33% Some college
– 15% Grade/high school
– 46% No formal genetics education
• Insurance– 64% Private
– 8% No insurance
• Age Distribution– 24% 31 to 40
– 22% Over 60
• Employment Status– 50% Working fulltime
– 17% Working part-time
– 18% Retired
– 15% Unemployed
What “Genetics” Means
• Study of genes, chromosomes, DNA
• Heredity, family traits
• Genetic testing
• Children born with birth defects (28%)
• Environment, science
• Culture
“I think of my culture. Where we come from, who we are, where we were born and the race that we belong to?”
Impact Heredity/Family Traits
• Family health histories
• Reluctance to discuss health issues (24%)
• Environmental, lifestyle and behavior risks• Reported inherited diseases (57%)
“The first thing that you will think is, Oh my God do I have it? Am I going to have it? Is it hereditary?…”
“I have all of my teeth … But you know, my father had [good] teeth… I got a genetic trait…that benefited me”
Perceived Hereditary Conditions
36
18
1312
53
0
5
10
15
20
25
30
35
40
Diabetes High BloodPressure
Cancer Sickle Cell HeartDisease
Down'sSyndrome
Percent (%)
Genetic Research/Testing Issues
• Participation in research (45%)
– 89% fund research activities
• Exploration of genetic risk factors (95%)
– Knowing results more harm than good (34%)
“I guess I think about how will this testing be used, the results? Will everyone benefit…or is it just for a select few?”
What “Access” Means
• Knowledge about services/information – Central State source for genetic information (84%)– Health care provider (57%), Internet (38%), Health department
(31%)
• Availability of genetic counseling services– University (39%), Medical center (31%) Health care providers (31%)
Don’t know (13%)
• Affordable of services– Genetic testing paid by insurance (73%) – Genetic counseling paid by insurance (71%)– Assure access to genetic counselors (96%)
Barriers To Using Genetic Services
• Location of services – 78% can see genetic specialist within
their community
• Issues of trust and fear– Cause of discrimination (72%)– Privacy protection laws (81%)– Test confidentiality (73%)
“…there was a guy named Hitler you know.” “They try things …with soldiers.” “Soldiers are guinea pigs.” “Yeah”. “You got them [soldiers] always in labs…. [laughter] I’ve seen em.” “This study is being funded by who?”
What “Empowerment” Means
• Equipping community members with resources and knowledge – Resources to increase public’s awareness of
genetics (95%)
• Making informed decisions– Genetic discoveries effecting health (99%)– Importance of workplace environment and possible
genetic disease (90%)
I “I don’t want everyone [to] be making the decision about my race and none of my race is at the table. So, I would just feel more comfortable with more of us at the table.”
Community Action Plan• Goal One: Assist experts in development
of culturally appropriate materials– To be accomplished
• Goal Two: Hosting of genetic educational events in community– Accomplished and ongoing
• Goal Three: Assist experts in development of advocacy skills of community members– Accomplished and ongoing
Community Action Plan
• Goal Four: Disseminate genetic information and materials for community residents – Accomplished and ongoing
• Goal Five: Increase interest of youth in careers related to genetics and science – Accomplished and ongoing
• Goal Six: Increase interest of youth in genetics and science in general – Accomplished and ongoing
Dr. F. Collins, Director of the National Human Genome Research Institute exploring genetics with youth at the 2004 Genetic Alliance Conference in Washington, DC.
Participant Quote
“We need to get on the forefront, get involved with it [genetics], so that we can train and teach our culture what’s going on so that we can reap the benefits of it…When, as a group of people [are] we going to take the time to understand and learn… I want to be a part of this. …we need to look at how we can have a voice in this and help the people.”
AcknowledgementsThe Genetic Education Needs Evaluation (GENE) Project was supported by grant U33 MC 00157-05 from the Health and Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch. Partners in the project include Health Resources and Services Administration, March of Dimes, Michigan GENE Project, Washington Heights/Inwood GENE Coalition, Genetic Alliance and Family Voices.
• MI GENE Project SurveyThe 50-item questionnaire was adapted from the ‘2000-02 Michigan Genetics Plan: Assessment of Service and Infrastructure Needs. Rosalyn Y Beene, MPH and Janice V Bach, MS’. Questions from both the Consumer and General Public surveys were used to develop the Michigan GENE Survey. The surveys included questions about income and employment status and were developed to further quantify the awareness and general opinions of Michigan residents about genetics.
The MI GENE Project CAB extends a special appreciation to our visionary, Vence L Bonham, Jr. J.D., senior advisor to the director of the National Human Genome Research Institute and Chief of the Education and Community Involvement Branch of the Office of Policy, Education and Communication.
Contact Information:
Othelia Washington Pryor, PhD
Project Director
P O Box 4654
East Lansing, MI 48826
517-337-0705
Evaluation of theGenetic Education Needs Evaluation
(GENE) Project
Teresa DoksumSusan FosterRahn DorseyGabriela GarciaJune 23, 2005
Overview of Presentation
• Purpose of evaluation
• Evaluation approach and methods
• Evaluation results– Partnerships
• Outcomes
• Critical success factors
– Lessons learned re:national-community genetics education projects
• Conclusion: Did GENE achieve its goals/objectives?
Purpose of Evaluation of GENE Project
• To describe the process for implementing community-based approach to GENE
• To assess the effectiveness of these community-based approaches to genetics education
• To provide feedback for continuous program improvement
Our Participatory Approach to Evaluating GENE
• Gave a primer on evaluation and logic models to national and community partners (www.wkkf.org)
• Collaborated with partners to clarify goals/objectives, design evaluation and develop logic models
• Solicited feedback from stakeholders on research questions, interview guides, draft evaluation reports
• Conducted case studies to determine whether a single model for community engagement emerged versus assuming one model existed
• Worked collaboratively with local evaluators to design and conduct community-level evaluations
Data Collection Methods
• Interviews with:– National partners– Community partners
– Members of coalition/community advisory board
• Case studies of community projects
• Participant observation of meetings and calls
• Document review
Evaluation Results: Outcomes of Partnerships
Awareness/knowledge about each others’ organizations
Knowledge of genetics and genetics education needs of underserved communities
Sharing of resources
Collaboration on other initiatives
Participation in each others’ conferences, meetings, dissemination events
Partnerships: Critical Success Factors
• Respect and trust
• Shared commitment to genetics education in underserved communities
• In-person contact via project meetings and conferences
• Regular communication using multiple methods
• Consistency of representatives
• Representatives with shared cultural background
Partnerships: Lessons Learned
• Building relationships takes time, effort and resources (just being at the same table is not sufficient)
• Partnerships are more challenging if partners are chosen rather than choosing each other, especially when there is no prior relationship
• Roles and expectations need to be clearly defined up front and revisited as project evolves
Partnerships: Lessons Learned, cont.
• Changes in representatives and leadership requires proactive transitions
• Relationships must be mutually beneficial
• National and community participants not initially prepared to create partnerships, which required the development of communication, management, and negotiation skills
National-Community Partnerships: Lessons Learned
• The ideal community-level representative of national organizations:– Is a resident and/or works in the community– Is familiar with and reports to national organization– Shares cultural background of community– Shows respect for community members– Has a consistence presence at meetings and activities– Has been given adequate time/resources to participate
GENE Project and Project Connect: Example of Successful National-Community Partnership
• Through Project Connect, over a dozen members of both communities attended annual Genetic Alliance conference
• Michigan GENE project partner helped develop workshop on outreach and advocacy
• Youth from both communities participated in conference
GENE Project and Project Connect: Example of Successful National-Community Partnership, cont.
• Post-conference interviews with participants found:
– Community members attended in part due to relationship formed with GA representative
– Participants were highly satisfied with knowledge gained about genetics, GA, and outreach as well as networking opportunities
– Conference presenters inspired and motivated participants
– Participants shared information/resources with community after the conference
Lessons Learned re:National-Community Initiatives
• Managing initiative is time-consuming and resource intensive
• Achieve consensus early re: operational definition of “participatory” (decision-making authority what information is communicated and to whom)
• Assess technical assistance needs and provide technical assistance to communities to build capacity and encourage ownership (e.g. contracting, research and evaluation)
Lessons Learned re: National-Community Initiatives, cont.
• The desire for influencing organizations may be two-way (grantee/community may want to influence funder(s) organization(s)
• All partners need to perceive that distribution of resources is equitable, appropriate to the task, and adequate
• Encourage community-community partnerships and sharing of lessons learned
Grantee/Community
Funder(s) Organization(s)
• HRSA/MOD engaged national and community partners
• Communities assessed the genetic education needs/assets using methods appropriate to their context
• Communities developed plans to meet the needs identified
Conclusion: Did GENE Achieve Its Goals/Objectives?
• Results and lessons learned from the project are being disseminated (which could lead to replication)
• Partners are beginning to participate in genetics policy
• HRSA has funded MOD to develop educational materials and expand to 4 communities
Conclusion: Did GENE Achieve Its Goals/Objectives? cont.
National and Local Partners GENE Project
AcknowledgementsThe mission of the Genetic Education Needs Evaluation (GENE) Project is to develop community-based participatory strategies to improve access to culturally and linguistically appropriate genetics information, resources, and services to assist underserved populations in making informed choices about their health. Partners in the project include Health Services Resources Administration, March of Dimes, Michigan GENE Project, Washington Heights/Inwood GENE Coalition, Genetic Alliance and Family Voices. This project is supported by grant U33MC00157-05-01 from the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.
