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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 13 th 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

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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

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Forming a CBPR partnership BackgroundEvaluating the partnership Outcomes and future directions of partnership Group Exercise Outline

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BACKGROUND

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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 Medicare$7,631 VA$5,234 Medicaid$5,012 Prison$3,985 IHS$2,130

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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.

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

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

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Wellness Center: The Setting Socialization Group activities Supportive environment for fitness regardless of ability Welcoming Cultural sensitivity Celebration Building community

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IHCs 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)

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

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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

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

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

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IHCs DPP Annual Conversion Rate to Diabetes

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FORMING A CBPR PARTNERSHIP

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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 Why CBPR?

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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

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Partnership Formation CBPR

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Partnership formation process Attended CBPR Summer Institute at UCSF and UCB Introduced to Stanford Office of Community Health (OCH) Office of Community Health (OCH) searched within Stanford for a good match Program on Prevention Outcomes and Practices (PPOP)

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Embarking on a Co-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 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

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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

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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

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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

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AiCAB Members 2013 Board Members

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PARTNERSHIP EVALUATION

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Partnership Evaluation Adapted tool developed by Schultz et. al. in 2003 to reflect urban AI/AN context OCH staff conducted in-depth interviews with CAB members, IHC and PPOP staff 8 of 10 CAB members participated in in-depth interviews Partnership interpreted findings collaboratively

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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

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Evaluation Findings Group 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

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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

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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

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OUTCOMES AND FUTURE DIRECTION OF PARTNERSHIP

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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

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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

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Future Enhance DPP Bring DPMP to Native population Publish Disseminate to other Native communities Achieve policy changes Improve diabetes outcomes for AI/AN in Santa Clara County

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Group Exercise: Solutions for Building a Successful CBPR Partnership

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

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

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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 everyones 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

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

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