Carolyn Jenkins, DrPH , APRN-BC, RD, FAAN Ann Darlington Edwards Chair and Professor

1. Improving Outcomes for Diabetes in African Americans: Lessons Learned for REACH Charleston and Georgetown Diabetes Coalition Carolyn Jenkins, DrPH, APRN-BC, RD, FAAN Ann Darlington Edwards Chair and Professor Medical University of South Carolina phone: 843-792-4625 e-mail: jenkinsc@musc.edu

2. Goals for Today Review diabetes statistics. Share some processes and outcomes from community-based participatory research and service learning. Review an expanded chronic care model for improving outcomes in African American communities. Explore needed community changes.

3. 1990 Females Males Diabetes is the Fifth Deadliest Disease in the U.S. and Its Prevalence is Increasing 1999 2005  6.9%  7 to 9.6% 4.9% U.S. Prevalence (% of population) Lifetime Risk if Born in 2000 39% 33% 31% 27% Whites: 50% 40% African Americans: 53% 45% Hispanics: Sources: American Diabetes Association: Economic Costs of Diabetes in the U.S. in 2002. Diabetes Care. 2003;26:917-932. Venkat Narayan KM, Boyle JP, Thompson TJ, Sorensen SW, Williamson DF. Lifetime risk of diabetes mellitus in the United States. JAMA. 2003;290:1884-1890. American Diabetes Association: Diabetes Statistics for African Americans. Available at: www.diabetes.org/diabetes-statistics/african-americans.jsp. Accessed March 14, 2005. American Diabetes Association: Diabetes Statistics for Latinos. Available at: www.diabetes.org/diabetes-statistics/latinos.jsp. Accessed March 14, 2005.

4. Males Females How Serious Is Diabetes? It predictably affects both lifespan and quality of life 40 40 Age at diagnosis: 11 - 13 12 - 17 Lost # of life years: Lost # of quality-adjusted life years: 21 - 24 18- 20 Source: Venkat Narayan KM, Boyle JP, Thompson TJ, Sorensen SW, Williamson DF. Lifetime risk of diabetes mellitus in the United States. JAMA. 2003;290:1884-1890.

5. The Burden of Diabetes Is Greater for Minority Populations in the United States Diabetes affects: 10.8% of African Americans 10.6% of Hispanics 6.2% of Whites Diabetes in African Americans Sources: American Diabetes Association: Diabetes Statistics for African Americans. Available at: www.diabetes.org/diabetes-statistics/african-americans.jsp. Accessed March 14, 2005. American Diabetes Association: Diabetes Statistics for Latinos. Available at: www.diabetes.org/diabetes-statistics/latinos.jsp. Accessed March 14, 2005. Mokdad AH, Ford ES, Bowman BA, et al. Diabetes trends in the U.S.: 1990-1998. Diabetes Care. 2000;23:1278-1283. • 2.7 million (11.4%) over age 20 • 60% higher than in whites • Higher complication rates • 2X as likely to suffer lower-limb amputations • 2X as likely to suffer from diabetes-related blindness

6. The Financial Impact of Diabetes Is Staggering Total Health Care Costs in 2007 Per capital costs averaged $11,744 Diabetes: $132B Direct Expenditures: $92B Indirect Expenditures: $58B • Lost workdays • Restricted activity days • Mortality • Permanent disability $27B $58B $31B Diabetes Care Related Complications OtherMedical Care Source: American Diabetes Association: Economic Costs of Diabetes in the U.S. in 2007. Diabetes Care. 2008;31,1-20.

7. Diabetes Costs • Annual health care costs for people with diabetes: $11,744. • One of every 5 health care $ spent caring for person with diabetes. • One of every 10 health care $ is attributed to diabetes. • Costs for people with diabetes 2.3 X higher than those without diabetes. Diabetes Care 2008

8. South Carolina Statistics • In 2005 BRFSS: • 10.3% reported they had diabetes • African Americans (15.4%) • Non-Hispanic Whites (8.4%) • Insulin treated (29.5%) • “Pills” (72.9%) • A1C test in past year (77%) • Never had A1c (23%) • Diabetic eye disease (21.7%) • No insurance and/or no doctor (~18%) • African Americans (26.6%) • Non-Hispanic whites (15.1%)

9. Risk Factors Among African Americans in SC Current Overweight Sedentary HBP Diabetes High Smoker Obesity Lifestyle Cholesterol • Diabetes in SC: • Two-thirds of people with diabetes • die of heart disease and stroke • 1 of every 7 African-Americans has • diabetes, which is 80% higher than • rate for non-Hispanic whites.

10. Diabetes in African Americans in South Carolina • In Charleston and Georgetown Counties, 21% of African Americans reported having diabetes (2005 RRFS) • Rural African Americans with diabetes: • 60.6 % have inadequate control versus 42.5% of urban whites (SC BRFSS)

11. Disease risk, diagnosis, progression of disease, response to treatment, caregiving, and overall quality of life are all affected by a number of variables including race, ethnicity, gender, socioeconomic status, age, education, occupation, country of origin, and perhaps other lifetime and lifestyle differences.

12. DIABETES-ATLAS Conceptual Model National Minority Health Month Foundation (2007) http://www.nmhmf.org/diabetes_initiative.aspx

13. Percentage of the 2005 Population Diagnosed with diabetes

15. 1994-present CBPAR Activities and Diabetes Management

16. From Meredith Minkler, DrPH University of California, Berkeley

17. Enterprise Neighborhood Health Program (1994 – 1998) HUD Grant with Charleston’s Enterprise Community to a) recruit and train community leaders to become Community Health Advocates; b) conduct needs assessment. Needs assessment identified diabetes and HTN as priority issues. 61 community health advisors trained. Video documenting needs and assets using community voices AKA Summer Enrichment Program for children

18. Diabetes Initiative of South Carolina • 1994—Report to SC Legislature on “Scope and Problems of Diabetes in SC” • Funding by State Legislature to create Center to address diabetes in SC • Center of Excellence at MUSC • Professional Council • Outreach Council • Surveillance Council • Annual Report on activities and outcomes to South Carolina Legislature and Governor

19. Enterprise Health Center 1995 - 2001 Donation of Lot Building Completed Opened November 2001 Now a FQHC site (FCFFHC)

20. Service-Learning • An educational methodology based on a community-campus partnership which combines student community service with explicit learning objectives.  Students participating in service-learning are not only expected to provided direct community service but also to learn about the context in which the service is provided, and to understand the connection between the service and their academic coursework. Seifer 1998

21. Service Learning with Students >700 students (MUSC, Clemson, Howard, USC, Rhode Island, UNC) 7 Doctoral Candidates/Graduates 6 Certified Diabetes Educators 7 doctoral dissertations 3 masters thesis 20 regional or national presentations 10 peer-reviewed publications

22. Healthy South Carolina Hypertension and Diabetes Management and Education Program (HAD-ME) Health care team conducted weekly screening, management, and education clinics (with linkages to primary care) in inner-city neighborhoods (1997-2001) > 900 community residents with diabetes and/or hypertension participated. > 1,100 referrals to primary care Significant decreases in BP, blood glucose, and weight

23. REACH 2010: Charleston And Georgetown Diabetes Coalition’s Efforts to Decrease Disparities for Diabetes Arlene Case-The Lesson

24. A heath disparity population is “a population where there is significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or survival rates in the population as compared to the health status of the general population”1. Minority Health and Health Disparities Research and Education Act of 2000

25. REACH 2010: Charleston and Georgetown Diabetes Coalition Tennessee SC DHEC Region 6 NorthCarolina SouthCarolina County Library • Statewide REACH home-based • in Columbia: • Communicare • SC DHEC • SC DPCP • Carolina Center for Medical Excellence Georgetown Georgetown Diabetes CORE Group East Cooper Community Outreach S. Santee St. James Senior Center Enterprise Health Center Enterprise Community TriCounty Black Nurses Georgia St. James Santee Health Center TriCounty Family Ministeries Trident United Way Alpha Kappa Alpha Sorority SC DHEC Region 7 Franklin C. Fetter Family Health Center Charleston County Library MUSC MUHA Diabetes Initiative College of Nursing

26. Methods and Interventions Community skill-building and neighborhood clinics 175 lay educators trained Diabetes self management education Foot care training Wise Woman for AA women 40-70 years old Community health professional training 145 RNs with advanced foot/wound education 27 physicians with foot care education Outreach by professional and lay educators 30 minute TV program aired 34 times on cable Library program/Internet use Weekly diabetes management classes in 8 sites Health systems change Registry and reminder system CQI teams Coalition building and policy change

27. Community and Media Activities reached >40,000 African Americans Neighborhood Walk and Talk Groups Community Screening and Education Skill-Building for CHAs and Volunteers Individual and Group Education Sessions

28. Percent with > Annual A1c by Race (increased from 76.8% in 1999 to 97.1% in 2006)

29. Percent with > Annual Lipid Profile by Race (increased from 47.3% in 1999 to 87.2% in 2006)

30. Percent with Kidney Testing (microalbuminuria) by Race (increase from 13.4% in 1999 to 56% in 2006)

31. Percent with > Annual Foot Exam by Race (increased from 64.1% in 1999 to 97.3% in 2006)

32. Percent with BP < 130/80 by Race (increased from 24% in 1999 to 38.2% in 2006)

33. Percent of Visits with Teaching by Race (increased from 41% in 1999 to 93% in 2006)

34. Lower Extremity Amputations (1999-2002) Charleston County

36. www.musc.edu/reach

37. Although studies documenting disparities are not in short supply, findings about what works to reduce disparities are. A 3-year, $6-million program called Finding Answers: Disparities Research for Change, sponsored by the Robert Wood Johnson Foundation, seeks to identify effective interventions to eliminate disparities. Under the direction of Marshall Chin, MD, MPH, an associate professor of medicine at the University of Chicago Pritzker School of Medicine, the program reviewed more than 200 journal articles on disparity reduction interventions in cardiovascular disease, depression, diabetes, and breast cancer. The results appeared in October 2007 in a supplement to Medical Care Research and Review. One of the few studies in the review that showed a reduction in racial disparities was part of the Racial and Ethnic Approaches to Community Health (REACH 2010) program, sponsored by the US Centers for Disease Control and Prevention in Atlanta, Ga. The demonstration program, which took place in Charleston and Georgetown counties in South Carolina, brought together 28 community partners, from health professionals to college sororities and local media, that set goals to improve diabetes care for blacks as well as eliminate health care disparities between black and white patients with diabetes. The partners documented disparities in care for 12,000 black patients with diabetes in the 2-county community. The intervention included such community activities as health fairs, support groups, grocery store tours, community clinics, and church-based educational programs. After 24 months, the partners audited medical charts for 158 black patients and 112 patients who were white or of other racial or ethnic groups. They found that differences between black and white patients in rates of hemoglobin A1c testing, lipid and kidney testing, eye examinations, and blood pressure control that had ranged from 11% to 28% at baseline had been eliminated (Jenkins C et al. Public Health Rep. 2004;119[3]:322-330). Chin is optimistic that other communities will develop their own, similar programs in the future. "There are a lot of promising models," he says. "But you may have to revise as you go along, just like in patient care." Quote from R. Voelker in JAMA  2008;299(12):1411-1413.

38. REACH US:SouthEastern African American Center of Excellence for Eliminating Disparities for Diabetes REACH US SEA-CEED

39. REACH US Center of Excellence A coordinated multi-system, multi-media, intergenerational approach to prevention and control of diabetes and its cardiovascular complications to eliminate health disparities in African Americans at risk and with diabetes.

40. Geographical Areas: African Americans with Diabetes and Stroke in North Carolina, South Carolina Georgia

42. What is needed to improve diabetes care and outcomes in African Americans in South Carolina?

43. IOM’s 8 Competency Areas Informatics Genomics Cultural competence Communications Community based participatory research Ethics Policy and law Global health Gebbie et al. (2001)

44. Evidence-Based Practice • Practice supported by research findings and/or demonstrated as being effective through a critical examination and review of current and past practices. EBP integrates patient preferences with research evidence, to determine best course of action to improve health.

45. Listen to the StoriesWhile the stories are being told, don’t offer solutions too early!! Work together to identify the issues and develop the solutions.

46. Go to the people.Live among the people.Learn from the people.Work with the people.Start with what the people know.Build on what the people have.Teach by showing, learn by doing.Not a showcase but a pattern.Not odds and ends, but a system.Not piece meal, but an integrated approach.

47. Determinants of Health from National Academy of Sciences, Epidemiology Review 2004;26:124-125 Life Course Social & Economic Policies Institutions Neighborhoods/Communities Living Conditions Social Relationships Individual Risk Factors Genetic/Constitutional Factors Pathophysiologic Pathways Individual and Population Health Environment

48. Chronic Care Model Community Health System Health Care Organization Resources and Policies ClinicalInformationSystems Self-Management Support DeliverySystem Design Decision Support Prepared, Proactive Practice Team Informed, Activated Patient Productive Interactions Improved Outcomes Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice(1), 2-4.

49. Care man. roles Practice team Care coordination Proactive follow-up Planned visit Visit system changes Leadership support Provider participation Coherent system QI Guidelines Provider education Expert support Patient education Patient activation Self-management assessment Self-management resources Collaboration on decisions Guidelines to patients For patients For community Registry Info for care management Performance data A Model for Chronic Illness Care Health System Organization Delivery System Design Self-Management Support Decision Support Clinical InformationSystems Links to Community Resources Adapted from: Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice(1), 2-4.

50. World Health Organization Social Ecology Adaptation of Wagner’s Chronic Care Model • Notice the added community involvement • Still low on patient, family & social network participation or accounting for sociocultural variations • Taken from Epping-Jordan, J., Pruitt, S., Bengoa, R., and Wagner, E. (2004). Improving the quality of health care for chronic conditions. Quality and Safety in Health Care, 13, 200-305. doi:10.1136/qshc.2004.010744