Transcript GENE Project

MCHB/DSCSHN
June 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 Communitybased 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 communitybased 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
Figure 1
Phase I: Participatory Action Research & Coalition Building Model
PROCESS
A
C
T
I
V
I
T
I
E
S
2
Coalition
Formation
3
Capacity
Building
(Training)
4
Data Collection
& Analysis
5
Dissemination
of Findings
6
Develop
Action Plan
(Logic Model)
Problem
Definition
Orientation
Community
Organizing &
CoalitionBuiling
Community
Survey
Community
Forum &
Town Meeting
Develop
Goals &
Objectives
Community
Involvement
Strengthening
Genetics
101 & 201
Focus Groups
Formation of
Working
Committees
Strategies
Establish
Community
Action
Coalition
Applied
Research
Methods
Analyses of
Epidemiology
Data
Strengths &
Limitations
Assessment
of Community
Resources
Resources
Needed
1
Community
Entry &
Engagement
Evaluation
Giachello et al, 2003, Journal of Public Health Reports. 118(4),
Chart 2
Proposed Overview
of Activities
Phase I
Understanding Context,
Causes, & Solutions
around
genetics
-Partnership formation
-Capacity Building
-Training
- Inter-group Relations
Phase II
(On-going )
Community
Action
Plan
Implementation
WH/I
GENE
Coalition
Community
Interventions
Action Planning
(Logic Model)
Building
Community
Capacity thru
training
Community & System
Change
Community
Awareness campaign
Education
Program
Health & Human
services provider
training
Health Care
System
(Access to Genetic
Services; cultural
competency)
Other Sectors (e.g.,
school System)
( on-going )
Individual/family
education
Lifestyles/
Protective Behaviors
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
Washington Heights and Inwood (WH/I) GENE
Coalition
Maria Zoquier_Estevez
[email protected]
WH/I GENE Coalition
Consumer Genetics Education
Needs and Assets Assessment
Survey Goals & Objectives
Community 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
Chart 2.2
Reported
Having
An having
Inherited
WH/I: % of Respondents
who reported
an
inherited conditions by
Ethnicity,
2004
Condition
by
Ethnicity
H im/H er self
Latino
37.6
33.2
14.2
28.1
Relative(s)
African
American
Non-Latino
Whites
Total
0%
31.5
29.6
14.8
40.7
Friend(s)
26.6
34.6
20%
29.1
17.7
31.9
40%
45.6
15
60%
No
31.1
80%
100%
Source:MOD/WHI:WH/I Consumer
Genetics Education Survey, 2004
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
Never heard about DNA
Genetic diseases are contagious
Down's Syndrome is passed to children
Genetic diseases make you sick
Genes are made of DNA
Latino
Genes are instructions
African
American
0
20
40
Non-Latino
Whites
60
%
Source: MOD/WHI: WHI Consumer Genetics
Education Survey, 2004
80
100
Community Residents’ Topics of
Interest in Genetics
Newborn screening test
Link genetic & cancer
Link genetics & asthma
Link genetics & diabetes
How genetics impacts my life
Role of genetics in health
Genetics
0
10
20
30
40
50
60
%
Total
Non-Latino Whites
African American
Latino
Source: MOD/WHI: WHI Consumer Genetics
Education Survey, 2004
70
80
90
100
Interest in Additional Information About
Genetics & the Coalition
56.6
Latino
17.5
Want more
info. about
genetics or
WHI
29.6
African
American
7.4
24.1
Non-Latino
1.3
Whites
46.7
Total
Interested in
joining WHI
13.0
0
10
20
30
40
50
%
Source: MOD/WHI: WHI Consumer Genetics
Education Survey, 2004
60
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
Project Goals
1. 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
41
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
Information flow
Community Based Organizations
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
Percent (%)
40
36
35
30
25
20
18
15
13
12
10
5
5
3
0
Diabetes
High Blood
Pressure
Cancer
Sickle Cell
Heart
Disease
Down's
Syndrome
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.”
Acknowledgements
The 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 Survey
The 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
[email protected]
Evaluation of the
Genetic Education Needs Evaluation
(GENE) Project
June 23, 2005
Teresa Doksum
Susan Foster
Rahn Dorsey
Gabriela Garcia
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)
Grantee/Community
All partners need to perceive
that distribution of resources
is equitable, appropriate to the
task, and adequate
Encourage communitycommunity partnerships and
sharing of lessons learned
Funder(s) Organization(s)
Conclusion: Did GENE Achieve Its
Goals/Objectives?
• 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? cont.
• 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
National and Local Partners GENE Project
Acknowledgements
The 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.