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Information about GENEProject

Published on February 13, 2008

Author: Teobaldo


MCHB/DSCSHN June 2005 Webcast:  MCHB/DSCSHN June 2005 Webcast GENE Project Penny Kyler Genetic Services Branch Moderator Background Of The GENE Project :  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? :  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? :  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:  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:  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 413-1952, Presentation at HRSA webcast, June. 23, 2005 Objectives of Presentation :  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 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:  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):  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):  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 :  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:  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):  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):  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?:  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 Slide18:  Giachello et al, 2003, Journal of Public Health Reports. 118(4), Chart 2 Proposed Overview of Activities:  Chart 2 Proposed Overview of Activities WH/I GENE Coalition Building Community Capacity thru training Community & System Change Community Awareness campaign Education Program Individual/family education Understanding Context, Causes, & Solutions around genetics Action Planning (Logic Model) Other Sectors (e.g., school System) Health Care System (Access to Genetic Services; cultural competency) Lifestyles/ Protective Behaviors Health & Human services provider training Community Interventions Community Action Plan Implementation -Partnership formation -Capacity Building -Training - Inter-group Relations Phase I Phase II ( on-going ) (On-going ) Summary of the benefits of CPAR:  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?:  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.):  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:  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:  Representatives from Washington Heights GENE Coalition Washington Heights and Inwood (WH/I) GENE Coalition :  Washington Heights and Inwood (WH/I) GENE Coalition Maria Zoquier_Estevez WH/I GENE Coalition Consumer Genetics Education Needs and Assets Assessment :  WH/I GENE Coalition Consumer Genetics Education Needs and Assets Assessment Survey Goals & Objectives:  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 :  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:  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:  Summary of Preliminary Findings Characteristics of Survey Respondents:  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:  WH/I % of Respondents Who Reported Having An Inherited Condition by Ethnicity Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004 Knowledge of Genetics:  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:  Genetic Knowledge: % of Correct Answers Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004 Community Residents’ Topics of Interest in Genetics:  Community Residents’ Topics of Interest in Genetics Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004 Interest in Additional Information About Genetics & the Coalition:  Interest in Additional Information About Genetics & the Coalition Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004 Focus Groups: Major Themes :  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:  Next Step/Action Plan Based on the needs and assets assessments, the following priority areas have been identified: Community awareness and education Training activities aimed at health care providers and health promoters Other priorities areas such as recruitment and retention of coalition members Representatives from the MI Gene Project:  Representatives from the MI Gene Project What African Americans Need To Know About Genetics:  What African Americans Need To Know About Genetics Project Goals:  Project Goals Engage African Americans in community discussions on issues related to genetic information and services Identify barriers preventing national and state genetic organizations from effectively interacting with African American community Recommend strategies to eliminate the barriers and increase access to genetic information and services Develop community driven model to disseminate information that addresses community's genetic needs MI GENE Project Partners:  MI GENE Project Partners Needs Assessment :  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 Slide44:  Community Dialogue Process Community Based Organizations Information flow Demographic Information:  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 :  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:  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 :  Perceived Hereditary Conditions Genetic Research/Testing Issues:  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 :  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 :  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 :  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:  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:  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 Slide55:  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:  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:  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::  Contact Information: Othelia Washington Pryor, PhD Project Director P O Box 4654 East Lansing, MI 48826 517-337-0705 Evaluation of the Genetic Education Needs Evaluation (GENE) Project:  Evaluation of the Genetic Education Needs Evaluation (GENE) Project Teresa Doksum Susan Foster Rahn Dorsey Gabriela Garcia June 23, 2005 Overview of Presentation :  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 :  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:  Our Participatory Approach to Evaluating GENE Gave a primer on evaluation and logic models to national and community partners ( 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:  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:  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:  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:  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.:  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:  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:  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.:  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:  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.:  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 Slide73:  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? Slide74:  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:  National and Local Partners GENE Project Acknowledgements:  Acknowledgements

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