Improving%20Outcomes%20for%20Diabetes%20in%20African%20Americans:%20Lessons%20Learned%20for%20REACH%20Charleston%20and%20Georgetown%20Diabetes%20Coalition

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 [phone]
• e-mail jenkinsc_at_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
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
33
39
31
27
Whites
40
50
African Americans
53
45
Hispanics
Sources American Diabetes Association Economic
Costs of Diabetes in the U.S. in 2002. Diabetes
Care. 200326917-932. Venkat Narayan KM, Boyle
JP, Thompson TJ, Sorensen SW, Williamson DF.
Lifetime risk of diabetes mellitus in the United
States. JAMA. 20032901884-1890. American
Diabetes Association Diabetes Statistics for
African Americans. Available at
www.diabetes.org/diabetes-statistics/african-ameri
cans.jsp. Accessed March 14, 2005. American
Diabetes Association Diabetes Statistics for
Latinos. Available at www.diabetes.org/diabetes-s
tatistics/latinos.jsp. Accessed March 14, 2005.
4
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.
20032901884-1890.
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-ameri
cans.jsp. Accessed March 14, 2005. American
Diabetes Association Diabetes Statistics for
Latinos. Available at www.diabetes.org/diabetes-s
tatistics/latinos.jsp. Accessed March 14, 2005.
Mokdad AH, Ford ES, Bowman BA, et al. Diabetes
trends in the U.S. 1990-1998. Diabetes Care.
2000231278-1283.

• 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. 200831,1-20.
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.as
px
13
Percentage of the 2005 Population Diagnosed with
diabetes
14
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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 Charlestons 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

• 1994Report 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
gt700 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)
• gt 900 community residents with diabetes and/or
  hypertension participated.
• gt 1,100 referrals to primary care
• Significant decreases in BP,
  blood glucose, and weight

23
REACH 2010 Charleston And Georgetown Diabetes
Coalitions 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 population1.
• Minority Health and Health Disparities Research
  and Education Act of 2000

25
REACH 2010 Charleston and Georgetown Diabetes
Coalition


Tennessee

SC DHEC Region 6

North Carolina
South Carolina

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

Tri County Black Nurses






Georgia
St. James Santee Health Center

TriCounty Family Ministeries








Trident United Way
Alpha Kappa Alpha Sorority



Franklin C. Fetter Family Health Center
SC DHEC Region 7

Charleston
MUSC MUHA Diabetes Initiative College of Nursing
County Library
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 gt40,000
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 gt Annual A1c by Race (increased
from 76.8 in 1999 to 97.1 in 2006)
29
Percent with gt 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 gt Annual Foot Exam by Race
(increased from 64.1 in 1999 to 97.3 in 2006)
32
Percent with BP lt 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
35

 
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. 20041193322-330).
• 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
   2008299(12)1411-1413.

38
REACH USSouthEastern 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
41
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42
What is needed to improve diabetes care and
outcomes in African Americans in South Carolina?
43
IOMs 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, dont 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 200426124-125
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
Health System
Community
Health Care Organization
Resources and Policies
ClinicalInformationSystems
DeliverySystem Design
Self-Management Support
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
A Model for Chronic Illness Care
Health System Organization
Delivery System Design
Decision Support
Clinical InformationSystems
Self-Management Support
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 Wagners 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.
  doi10.1136/qshc.2004.010744

51
Conceptual Model for REACH US
Charleston and Georgetown Diabetes Coalition
(adapted from Jenkins et al., Barr et al. ,
Wagner)
1 Environment is viewed through an ecological
framework and includes social, political, and
economical aspects. 2 To categorize the various
community resource systems, we use the Community
Systems Wheel (Anderson and McFarland, 2006).
The systems include Health and Social Services,
Politics and Government, Safety Transportation,
Education, Communication, Economics,
Recreation, and Physical Environment. We added
Faith-based Services.
52
Community-Based Participatory Action Research

• A collaborative approach to research that
  equitably involves all partners in the research
  process and recognizes the unique strengths that
  each brings. CBPR begins with a research topic of
  importance to the community, has the aim of
  combining knowledge with action and achieving
  social change.

WK Kellogg Foundation Community Health Scholars
Program
53
Fundamental Characteristics of CBPAR

• It is
• participatory.
• cooperative, engaging community members and
  researcher(s) in a joint process with both
  contributing equally.
• a co-learning process.
• an empowerment process through which participants
  can increase control over their lives.

54
Fundamental Characteristics of CBPAR

• It involves systems development and local
  community capacity building.
• It achieves a balance between research and
  action.
• (Israel et al. 1998)
• It involves sharing of funding among partners
  (usually equally).

55
Identified Challenges for Communities and
Academic Institutions

• Understanding cultures
• Community culture
• Academic and institutional culture
• Differing philosophies.
• Sharing of budgets in an equitable way.
• Clearly defining and continuously implementing
  our principles for the partnership in a fair and
  equitable way.

56
Instructions for Community for Partnering with
Academic Institutions--Look For People that

• Begin their discussions with you by asking
  questions, rather than offering solutions.
• Recognize the gap between measuring differences
  and making differences.
• Demonstrate a willingness to help you measure the
  differences you make.
• Share control over financial resources and
  decisions with community representatives.
• Express commitment to a working relationship
  built on trust and equity.
• 
  Prev Chronic Dis. 2004 January 1(1) A12.

57
Common Characteristics of Successful
Community-Institutional Partnerships

• Trusting relationships
• Equitable processes and procedures
• Diverse membership
• Tangible benefits to all partners
• Balance between partnership process, activities,
  and outcomes
• Significant community involvement in
  scientifically sound research (Continued on next
  slide)

Seifer, 2006
58
Common Characteristics of Successful
Community-Institutional Partnerships

• Supportive organizational policies/reward
  structure
• Leadership at multiple levels
• Culturally competent and appropriately skilled
  staff and researchers
• Collaborative dissemination
• Ongoing partnership assessment, improvement and
  celebration
• Sustainable impact

Seifer, 2006
59
Recommendations for Emerging and Established
Partnerships

• Pay close attention to membership issues
• Build on prior history of positive working
  relationships
• Obtain support and involvement of both top
  leadership and front line staff of partner
  organizations
• Embrace diversity in the partnership
• Decide who the community is and who
  represents the community.

Seifer, 2006
60
Recommendations for Emerging and Established
Partnerships (continued)

• Develop rationale, criteria and procedures for
  adding new partners
• Develop structures and processes that facilitate
  the development of trust and sharing of influence
  and control among partners
• Jointly develop partnership principles and
  operating procedures
• Jointly create mission, vision, and priorities
  for the partnership

Seifer, 2006
61
Recommendations for Emerging and Established
Partnerships (continued)

• Strive to achieve an equitable distribution of
  costs, benefits, and resources among the partners
• Conduct ongoing evaluation of partnership process
• Build the capacity of all partners
• Plan ahead for sustainability
• Pay close attention to the balance of activities
  within the partnership
• Be strategic about dissemination

Seifer, 2006
62
Build Capacity of All Partners

• Facilitate partner training, technical assistance
  and continuing education
• Invest partnership resources in local community
• Establish and maintain partnership infrastructure

Seifer, 2006
63
Cultural Humility

• A life long commitment to self evaluation and
  self critique to redress power imbalances and
  develop and maintain respectful and dynamic
  partnerships with communities
• Tervalon
  Garcia, 1998

64
Assets in Community From Kretzmann McKnight.
(1993) Building Communities from the Inside Out
65
Identifying Natural Community Leaders

• When you have a problem, who do you go to for
  advice?
• Who do others go to?
• When people in the neighborhood have come
  together around a problem in the past, did a
  particular individual or group play a key role?
• What things do people tell you youre good at?
• Eng et al, 1990 Israel, 1985 Sharpe, 2000

66
Insider-Outsider Tensions

• Power dynamics the power of authority of the
  outsiders often multiple sources of unspoken
  privilege (Wallerstein, 1999)
• Conflicting time tables demands
• Differential reward structures (Minkler, 2006)

67
Perceived clash between community desires and
good science
68
We want to know how much you care, before we
know how much you know. Alma Joseph
Flores Enterprise Community
69
Partnership

• A strategic combining of resources that create
  power far beyond the capabilities of individual
  players working alone.

70
Thanks to Our Team (and to you)!

• REACH Community Partners and Staff
• Gayenell Magwood, Barbara Carlson, Jane Zapka,
  Martina Mueller, Leonard Egede, Marilyn Laken,
  Montrese Edwards, Virginia Thomas, Joyce Linnen,
  Lee Moultrie, Sonja Smalls, Syndia Moultrie,
  Karen Hill, George Bush
• REACH Partners Coaltion
• Charleston Diabetes Coalition
• Georgetown Diabetes CORE Group
• Diabetes Initiative of South Carolina
• Dr.John Colwell
• Dr. Kathie Hermayer
• Dr. Dan Lackland
• Dr. Brent Egan
• Pamela Arnold
• SC Diabetes Prevention and Control Program
• Centers for Disease Control and Prevention
• National Institutes of Health-NIDDK

71
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