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Carol Horowitz Cesar Vasquez

Carol Horowitz Cesar Vasquez. A Community-Based Partnership that Really Works: A Model for Diabetes Prevention. It’s Broken. Disparities in diabetes and its complications are widening (the problem). Our understanding of why things are broken has not translated into fixing the problem.

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Carol Horowitz Cesar Vasquez

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  1. Carol Horowitz Cesar Vasquez A Community-Based Partnership that Really Works: A Model for Diabetes Prevention

  2. It’s Broken • Disparities in diabetes and its complications are widening (the problem). • Our understanding of why things are broken has not translated into fixing the problem. • If it were easy to fix, this wouldn’t be the case. • So, what can be done? • New ideas • New partners

  3. A Relatively New Approach: CBPR • Definition • “A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings” • W.K. Kellogg Foundation (2001) • An approach (not a method) that alters researcher-community relationships • CBPR is NOT: • ”Community-placed” research • Sporadic or symbolic inclusion of communities

  4. Characteristics of CBPR • C&R contribute equally and in all phases of research. • Trust, collaboration, shared decision-making & shared ownership of research. • Findings & knowledge should benefit all partners. • Bi-directional, co-learning process. • Recognize, embrace local skills, strengths, resources, assets. • Balance rigorous research & tangible community action. • Emphasize the multiple determinants of health. • Partners commit to long-term research relationships. • Local capacity building, sustainability are key.

  5. Our Journey into CBPR- Diabetes

  6. Diabetes Prevention: National Epidemic to Local Initiatives • Prevalence increasing. • 1 in 12 adults have diabetes • 1 in 4 have pre-diabetes • DM epidemic parallels obesity epidemic. • Morbid Obese = 7x odds of having DM • Blacks and Latinos are more obese, have higher prevalence of diabetes and its complications.

  7. Why Pre-Diabetes? • 1 in 2 Afr.Americans and Latinos will develop diabetes if preventive measures not taken. • Pre-diabetes: • Fasting glucose 100-125 mg/dl • Post-prandial glucose140-199 mg/dl • 50% increase in all-cause mortality • Modest weight loss (5-7%) prevents or delays diabetes among overweight adults with pre-diabetes by 33% - 68%.* • Lifestyle interventions eliminate incident diabetes disparities among Blacks, Latinos and Whites* • Interventions rarely sustained or scaled for community benefit. * Diabetes Prevention Program Research Group, NJEM, 2002

  8. Why East Harlem?It’s The Epicenter of DM in NYC * = EH Has Highest Rate in NYC ** = EH Has Highest Rate in Manhattan

  9. Our Journey

  10. EH Partnership for Diabetes Prevention Community Action Board From Business, Housing, Social Service, Faith- Based, Health, Grass Roots • Most Members (15/20) also Local Residents Scientific Advisory Board as Needed Work through Subcommittees • Intervention, Evaluation, Community Engagement, Membership, Latino Ed. Meetings- Every 2 mo’s (subcommittees between) • Explicit Rule- 3 Strikes and You’re on Advisory Board

  11. Agreed Upon Study Objective To develop and pilot an RCT of peer-led intervention to prevent diabetes. Primary aim: Weight loss among overweight adults with pre-diabetes

  12. Study Development: Subcommittees 1- Clinician Education Educate EH providers about pre-diabetes & study 2- Evaluation Developed all survey and evaluation protocols Only ask Q if we can act on it- sleep apnea example 3- Intervention Program culturally appropriate, empowering, motivating 4- Latino Education Ensured study appropriate for Latinos in EH 5- Community Engagement Social marketing campaign, 5 recruitment strategies

  13. Methods: Study Design- The Rigor • Pre-screen-to find overweight EH residents • Return fasting for oral glucose tolerance test • CAB philosophy- do what’s done by best MD’s • If eligible (pre-diabetes level glucoses) • Survey, check BP, draw blood for cholesterol. • Randomize • Intervention vs. delayed intervention (after 1 year) • CAB philosophy- use most rigorous method so results accepted, used to influence policy • Follow-up (3, 6, 12 months)

  14. Our Intervention, Project HEED:Peer-Led Weight Loss Workshop 8-session peer-led program Goal: 5% weight loss Practical, culturally, economically appropriate Simple, low-cost so sustainable Small steps to improve diet and exercise, for lifelong benefit English and Spanish classes held at community locations Peer leaders, workshop graduates

  15. Methods: Recruitment and Enrollment Subcommittee of CAB charged with developing recruitment strategies. Developed and implemented 5 strategies and evaluated their effectiveness. Clinician Referral- Toolkit to all EH Providers Recruit at Public Events- Health Fairs, Farmers Mkts Festive Local Recruitment Events- “Parties” Recruit at / through CBOs Community Partner-led Recruitment and Enrollment -Partners tell researchers what’s needed to make recruitment work and insert researchers into their process

  16. Results: How’d We Do?In just 3 months, we … Approached (555) 50% Not eligible 5% Refused Consented (249) 29%Did not Return for Testing Tested for Pre-Diabetes (178) 29% Normal Glucose Enrolled those with Pre-Diabetes in Trial (99) 13%Diabetes

  17. Results: Partner-Led Approaches Enrolled Most Participants (of the 99 enrolled) 68% % Enrolled 13% 10% 8% 0% Horowitz, Brenner, LaChappelle, Amara, Arniella AJPM 2009

  18. Results: Population Enrolled 85% Female 89% Latino, 9% Black 77% Non-English Speaking 70% Unemployed 58% Did Not Complete High School 52% Below Poverty Level 49% Uninsured 49% Depressive Symptoms

  19. Results: Significant Weight Loss, Maintained at 12 Months Intervention Group lost 4.2% of weight at baseline Control Group lost 1.7% of weight at baseline Parikh, Simon, Fei, Looker, Goytia, Horowitz AJPH, 2010

  20. Other Important Findings • Higher than reported incidence of pre-diabetes and diabetes. • Only 29% with normal glucoses • Higher than reported progression to diabetes. • 25% in HEED • 10% in national studies

  21. Discussion: Recruitment Strategies Community partner driven recruitment strategy most successful in approaching and enrolling participants. Despite complex, time consuming enrollment including collecting blood Diagnosed and recruited 99 predominantly low income, non-English speaking, uninsured, undocumented people with pre-diabetes into a trial in just 3 months Academics gave up control and community partners came up with the best strategies. Trust and shared goals were the key here

  22. Discussion: Reasons for Successful Weight Loss Participants empowered to make changes to improve health by making and achieving realistic goals. Support from trusted peer leaders and other participants Medically underserved population may be more interested in diabetes screening and receptive to lifestyle interventions. Participants empowered to make changes to improve their own health. Diagnosis of pre-diabetes may inspire change

  23. Discussion: Role of CBPR • Developed a study both rigorous and practical in community settings. • Community leadership led to: • Rapid recruitment of hard-to-reach population • Reaching and motivating populations historically difficult to engage in research • Developed intervention relevant for and targeted to East Harlem residents. • Intervention has potential to be sustainable and useful in many communities. • AND- it’s fun, rewarding, it’s our new family.

  24. Discussion: Distinction between Community and Academics Blurs All partners are enthusiastic champions. Mutual commitment to timing and process Benefits community and academics, so people stay involved Both gain legitimacy in each others’ worlds We do “CBP” and we do “R” CBP: Community control led to great decisions Relevance and promise of the research to communities led to an intervention people want to be part of R: HEED is recognized and respected in scientific community- it worked, it yielded new information and the work holds up on scrutiny.

  25. What’s Working: Community Perspective Co-owners of Project HEED. Project resonates with, benefits community Breaks research down to layman’s terms so understood, accessible Able to advocate for local needs and approaches Insist clients’ needs be met as condition of participation Trusted, respected by community. History of service engenders trust in the project and makes them effective Community partners have academic mentors. Learning value of research, evaluation, new tools usable to gain resources and inform/influence policy

  26. What’s Working: Academic Perspective Partnership leads to new ideas and approaches. Research is both rigorous and practical. Research blends with service. Makes work incredibly rewarding and tangible Work may continue after grant ends Academics have community mentors. Keep them from making important mistakes Contribute new ways of thinking about what’s really going on with diabetes and how to do something about it

  27. Lessons Learned Need open communication about all aspects of project. Research protocols can be restructured to include community participation, without compromising research integrity. Partnering with community leaders who advocate for their constituents leads to better service and better research.

  28. Next Steps 5-year grant to expand pilot. 400 with pre-diabetes 200 with “pre pre-diabetes”— obese with normal sugars – both: Community sensitive (responding to community request that obese people not be excluded from a weight loss intervention) AND Good research idea- compare how those with pre-diabetes and those obese with normal sugars do in this type of intervention Enhance policy & advocacy work. Continue co-authoring/co-presenting.

  29. Cesar’s Message… “Following the CBPR model allowed us as a community to truly decide what would best address our community’s needs.” “After almost 5 years, I don’t see my fellow CAB members as just members of another group, I see us as interacting like a family. When we meet as a full board, it feels more like a family reunion to decide on what our family needs.”

  30. Conclusions Community representatives leading recruitment is most effective recruitment strategy. A peer-led, community-developed lifestyle intervention can promote weight loss through behavior change among a overweight adults with pre-diabetes. Intervention has potential to prevent/delay diabetes in a high-risk population through weight loss.

  31. Acknowledgements Our Community Board Maria Alejandro, Charles Cheeseboro, Barbdine Dawkins, Carlos Diaz, Crispin Goytia, Susanne Lachapelle, Naomi Langley, Eva Marcial, Ana Marchena, Janet Mintz, Martin Orduňa, Maritza Owens, Marietta Palmer, Debbie Quiňones, Mimsie Robinson, Felicia Saliva, Sandra Talavera, Mali Trilla, Thomas Vance, Carmen Vasquez, Ethel Velez • Partner Organizations • Project HEED Participants • Project Staff, Investigators, and Collaborators • And, THANK YOU !!!!

  32. Funders… New York State Diabetes Prevention and Control Program NIH- NCMHD (National Center on Minority Health and Health Disparities) The CDC- REACH US

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