MCHB/DSCSHN June 2005 Webcast

1. MCHB/DSCSHNJune 2005 Webcast GENE Project Penny Kyler Genetic Services Branch Moderator

2. 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

3. 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.

4. 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.

5. 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

7. 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 giachello1@aol.com, aida@uic.edu Presentation at HRSA webcast, June. 23, 2005

8. 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

9. 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

10. The GENE ProjectOverall 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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 Differences between traditional/Academic & Community Participatory Action Research (PAR)

17. 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

18. Giachello et al, 2003, Journal of Public Health Reports. 118(4),

19. Chart 2Proposed Overview of Activities Phase II Phase I (On-going ) Understanding Context, Causes, & Solutions around genetics Community Action Plan Implementation WH/I GENE Coalition -Partnership formation -Capacity Building -Training - Inter-group Relations Community Interventions Action Planning (Logic Model) Building Community Capacity thru training Community & System Change Community Awareness campaign Education Program Individual/family education Health & Human services provider training Lifestyles/ Protective Behaviors Health Care System (Access to Genetic Services; cultural competency) Other Sectors (e.g., school System) ( on-going )

20. 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

21. 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

22. 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

23. 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

24. Representatives from Washington Heights GENE Coalition

25. Washington Heights and Inwood (WH/I) GENE Coalition Maria Zoquier_Estevez mzoquier@hotmail.com

26. WH/I GENE Coalition Consumer Genetics Education Needs and Assets Assessment

27. 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

28. 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

29. 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

30. Summary of Preliminary Findings

31. 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

32. WH/I % of Respondents Who Reported Having An Inherited Condition by Ethnicity Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004

33. 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

34. Genetic Knowledge: % of Correct Answers Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004

35. Community Residents’ Topics of Interest in Genetics Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004

36. Interest in Additional Information About Genetics & the Coalition Source: MOD/WHI: WHI Consumer Genetics Education Survey, 2004

37. 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”.

38. 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

39. Representatives from the MI Gene Project

40. What African Americans Need To Know About Genetics

41. 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

42. MI GENE Project Partners

43. 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

44. Community Dialogue Process Flint Town Hall Meeting Lansing Town Hall Meeting Flint Dialogue Sessions Flint Focus Group Information flow Presentation Report Research Team Community Advisory Board EVENTS Lansing Dialogue Sessions GROUPS Community Based Organizations PRODUCTS Dialogue Guide Research Team Lansing Focus Groups Community Advisory Board MI GENE Project

45. 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 Demographic Information

46. 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?”

47. 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”

48. Perceived Hereditary Conditions

49. 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?”

50. 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%)