Introductions

1. Using Community-based Participatory Research To Address Disparities In Obesity And Diabetes Among American Indians/Alaskan Natives: A Focus On The Partnership Development Process Community Campus Partnership for Health 13th Annual International Conference May 3, 2014 10:30 AM – 12:00 PM Ramin Naderi, MA Jan Vasquez , CHES, MPHc Lisa Goldman Rosas, PhD, MPH Jill Evans, MPH

2. Introductions • Introduce yourselves • Are you an academic partner, community partner, or something else? • Level of experience with CBPR • Brainstorm challenges with building a successful CBPR partnership • Assign a spokesperson to report to larger group

3. Outline

4. BACKGROUND

5. American Indian/Alaskan Native Peoples • Prior to colonization 10 million AIANs • By 1860 250,000 remaining • Health of AI/ANs has been shaped by: • Warfare and other forms of aggression, diplomatic manipulation, forced assimilation, legal actions, contagious diseases to which they had no immunity, and economic pressure for over 500 years • IHS responsible for providing health services through treaty

6. Santa Clara County • 50,000 American Indian/Alaska Natives (including mixed race) • Diabetes County Wide = 7.9% • Overweight (37%) and Obese (15%) = 52% Based on the California Health Interview Survey (CHIS) 2007, Center for Health Statistics, and Department of Finance population estimates.

7. Indian Health Center: A Federally QualifiedHealth Center (FQHC) Established in 1976 to support the health and wellness needs of American Indians in Santa Clara County

8. IHC Wellness Center • Fitness center • Health education • Case management and referral • Transportation • Injury prevention • Cultural activities

9. Wellness Center:The Setting • Socialization • Group activities • Supportive environment for fitness regardlessof ability • Welcoming • Cultural sensitivity • Celebration • Building community

10. IHC’s DPP(Based on NIH/NIDDK DPP study) National research study on diabetes prevention: • Conducted 1999 – 2001 • 3,000 participants • All races Study showed that: • Losing 7% of body weight, and • Increasing physical activity to 150 minutes per week decreased chances of developing diabetes by 58% (twice as much as medication)

11. IHC’s Diabetes Prevention Program (DPP)(Based on NIH/NIDDK DPP study) Interactive Curriculum After core support & activities Fitness instruction Practicing a healthy lifestyle Nutrition education • Goal • Lose body weight and increase physical activity to prevent diabetes. • Connect healing with fun, recreation, and fellowship and to empower. Fitness classes Incentives Lifestyle coaching Ongoing celebrations Health education Healthy cooking classes Healthy food & snacks Group support

12. Multi-disciplinary Team Approach As compared to the national sample, participants at IHC are more likely to be: Unemployed (42% vs. 19%) Making less than $15,000 annually (44% vs. 21%) Have higher rates of co-occurring illnesses (High blood pressure, depression, arthritis, back pain) Have higher rates of negative emotional experiences (distress, posttraumatic stress, anger- especially older males

13. DPP Holistic Approach Holistic and based on American Indian Cultural Practices We address the 4 aspects of a person: Physical Spiritual Emotional Mental

14. Multi-disciplinary Team Approach MD Mental Health Counselor RD/CDE Health Education Specialist Kinesiologist Registered Nurse Fitness instructors Data coordinator Patient advocate Volunteers, interns

15. IHC’s DPP AnnualConversion Rate to Diabetes

16. FORMING A CBPR PARTNERSHIP

17. Why CBPR? • With so many successes, why the need for CBPR? • To reduce disparities by addressing gaps in the current model • Address historical trauma through diverse strategies developed through community engagement • Increase Lifestyle coaching (case management) • Add tools that assess and measure historical trauma • Add DPMP

18. Goals of CBPR • Sustain and expand DPP program • Increase funding to enhance DPP to address specific historical trauma issues related to our community • Analyze DPP data • Publish • Disseminate • Empower community

19. CBPR CBPR Partnership Formation

20. Partnership formation process

21. Embarking on aCo-Learning Process IHC Mission To ensure the survival and healing of American Indians by providing health Stanford PPOP Mission To improve population health outcomes through research that fosters evidence-based prevention interventions care and wellness services Stanford PPOP Mission To improve population health outcomes through research that fosters evidence-based prevention interventions • Stanford OCH Mission • To develop, implement, and integrate education, research, and clinical training programs aimed at building leaders in community health Urban American Indian Alaska Native Community

22. Collaborative Visioning Process • This is an equal research partnership between IHC and the Stanford University PPOP to demonstrate effective models for improving health, reducing disparities, and informing policy. • As a partnership, we value meaningful community engagement, primary prevention and wellness, and rigorous research methodology • We are committed to sustainability of the IHC Community Wellness and Outreach Programs

23. Partnership Agreement Development Process • Collected examples and identified components that reflected our needs • Identified common values, short-term goals, long-term goals • Significant co-learning: • Urban AI/AN culture • IHC wellness promotion • Biomedical research model • CBPR • Grant writing

24. Establish American Indian Community Action Board (AiCAB) • Strategized on how to incorporate diverse segments of Urban AI/AN community • Recruited 10 identified leaders • Conducted digital story-telling workshop • Obtained seed grant from Stanford OCH • Conducted 3 four-hour workshops to develop group cohesion • Implemented Prevention Institute Training • Completed CBPR certification

25. AiCAB Members 2013 Board Members

26. PARTNERSHIP EVALUATION

27. Partnership Evaluation

28. Evaluation Findings • Environmental characteristics shaped group dynamics • Importance of Urban AI/AN history and culture • Previous negative perceptions/experiences with academia/ Stanford University • Diversity and complexity of urban AI/AN community • Community perceptions of diabetes prevention

29. Evaluation FindingsGroup Dynamics Strong Evidence for: • Shared leadership • Open communication • Development of conflict resolution process • Cooperative development of goals • Participatory decision making (consensus) • Development of mutual trust • Well-organized project management

30. Evaluation Findings Intermediate measures of partnership effectiveness HIGH Member involvement and commitment Group and community empowerment Benefits of participation Moderate to high perceived effectiveness MODERATE TO HIGH

31. Lessons Learned • Urban AI/AN culture at core of all activities • Initiation of partnership by community partner is ideal • Sincere and participatory co-learning was critical to process • Overlapping goals contributed to successes • Stanford OCH provided key resources and played critical facilitation and evaluation role

32. OUTCOMES AND FUTURE DIRECTION OF PARTNERSHIP

33. Early outcomes • CBPR process: • AiCAB • Co-learning/training activities • IRB training • Grants: • Submitted R24 to NIMHD • 2 successfully funded seed grants • Successful CDC REACH grant • Successful PCORI grant • CHRI grant (pending) • Kaiser Community Benefit grant (pending) • Awards • R24 unintended consequences • Derogatory comments in the review • Collaboration with NIHB & NCUIH • Similar experiences among other AIAN groups • Raise awareness about unfair reviews for AIAN studies • Advocated for training of reviewers at NIH • Article accepted for publication in AJPH

34. Near Future • Develop local community IRB • Expand programming and research to reach AI/AN adolescents • Increase capacity in addressing historical trauma • Continuously monitor and evaluate partnership development process • Develop tool kit with strategies for community engagement in urban AIAN communities

35. Future

36. Group Exercise: Solutions for Building a Successful CBPR Partnership

37. Group Exercise • Brainstorm potential solutions for building a successful CBPR partnership • Assign a spokesperson to report to larger group

38. Our Challenges • Developing trust (with each other and AI/AN community) • Our institutions • Aligning goals • Leadership challenges to goal • Slow process • Adequate funding

39. Overcoming Challenges • Having a broker • Good match from the beginning • All team members had years of experience in community • Everyone was invested in making partnership work • Taking time to lay the groundwork • Listening to everyone about direction • Valuing and acting on everyone’s contributions • Establishing co-learning from the start • Consistency (always showing up) • Going through challenges made us a stronger team • Having support from IHS • An extended network of support • Raising awareness throughout the country • Bringing in funding • Having optimism and hope

40. Thank You • Urban AI/AN community of Santa Clara Valley • AiCAB members • IHC staff • PPOP staff • OCH Staff

41. Contact Us Ramin Naderi, MACommunity Wellness and Outreach Director rnaderi@ihcscv.org Jan Vasquez (Chacon), CHES, MPHc Associate DPP Director jvasquez@ihcscv.org Lisa Goldman-Rosas, PhD, MPHResearch Director, PPOP lgrosas@stanford.edu Jill Evans, MPHResearch Program Director, OCH jille@stanford.edu