Supported by the Merck Company Foundation

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Implementing evidence-based diabetes programs at the community level: The Alliance to Reduce Disparities in Diabetes I. An Overview Belinda W. Nelson, PhD. Supported by the Merck Company Foundation www.alliancefordiabetes.org

People at low income levels, African American, Latino/ Hispanic people, and American Indians often experience the worst health outcomes.

Complications of diabetes for them can be severe, including: Amputation Kidney disease Heart disease Blindness

The Alliance to Reduce Disparities in Diabetes aims to change the outlook for those who experience the worst outcomes.

The Alliance aims to reduce disparities in diabetes outcomes by supporting: Evidence-based, community-focused interventions Efforts to ensure that successful programs and services are sustained in policy and practice Collaboration with key stakeholders at the national level through local levels to achieve policy and system change that reduces inequities in care and outcomes

Five U.S. cities are the focus of the Alliance s community level efforts: Dallas, Texas The Baylor Healthcare System s Office of Health Equity Chicago, Illinois The University of Chicago Memphis, Tennessee The Healthy Memphis Common Table Camden, New Jersey The Camden Coalition of Healthcare Providers Wind River Reservation, Wyoming The Eastern Shoshone Tribe in partnership with the Northern Arapaho Tribe

At the national level the Alliance is collaborating with key organizations who share our interest in advancing needed policy and systems change. Centers for Disease Control & Prevention, American Diabetes Association, American Association of Diabetes Educators, HHS Office of Minority Health, National Institutes of Health NIDDK, National Business Coalition on Health, National Council of Urban Indian Health, National Association of Community Health Centers, National Association of Chronic Disease Directors, National Association of County and City Health Officials

The University of Michigan Center for Managing Chronic Disease is serving as the Alliance National Program Office.

Alliance Community Programs* have three components: 1 2 3 Innovative, evidence-based patient education Front-line, proven health provider training including cultural sensitivity Sustainable quality improvements in health care access, and coordination *Dallas, Texas Chicago, Illinois Memphis, Tennessee Camden, New Jersey Wind River Reservation, Wyoming

The Alliance is capitalizing on the unique strengths of its community partners.

Chicago, Illinois The University of Chicago has strong community ties with the South Side of Chicago, an area known for social/political activism.

Memphis, Tennessee Healthy Memphis Common Table is a collaborative partner with over 100 churches in the faith-based community through Memphis Healthy Churches.

Wind River Reservation The Wind River Reservation Alliance leaders have a history of cultural bonds that are shared across the Shoshone and Arapahoe tribes.

Dallas, Texas Baylor Healthcare System s Office of Health Equity partners with Project Access Dallas to involve more than 2,000 physician volunteers.

Camden, New Jersey Camden Coalition of Healthcare Providers has exceptional capacity to work across health care institutions and coordinate city-wide information exchange.

PATIENT EDUCATION Grantees are employing evidence-based patient education programs to enable diabetes self-management and empower patients to become: more engaged in their health care decisions better at managing their diabetic condition adopters of behaviors that help prevent complications effective communicators with physicians and other clinicians

HEALTH PROVIDER EDUCATION Alliance interventions aim to enable clinicians to be more effective in working with diverse patients through training in cultural sensitivity and effective communication skills.

SUSTAINABLE ORGANIZATION AND SYSTEMS CHANGE Each Alliance community is introducing sustainable changes to how health organizations and providers manage their patients through improvements in: information exchange identifying patients at risk of developing diabetes or of complications access to care coordination of services assessment of outcomes, e.g., clinical measures, patient satisfaction with care and health care use and cost

Patient Level Intervention

Memphis Healthy Churches Diabetes for Life The Community High level of involvement with the faithbased community and health ministry model Community members have great trust in church-endorsed health care activities Target group is African American

Memphis Healthy Churches Diabetes for Life Approach to Patient Intervention: Memphis Healthy Churches: Coalition of 100+ churches Recruitment of participants: Churches Provider referral Community health screening events

Memphis Healthy Churches Diabetes for Life Stanford Chronic Disease Self Management Project Manager Certified Diabetes Educator Augmented with Conversation Mapping

Memphis Healthy Churches Diabetes for Life Patient Level Intervention Church Health Representatives work closely with Project Manager o Identify of potential participants in churches o Make referrals to Diabetes for Life Program o Participate in community health screenings

Memphis Healthy Churches Diabetes for Life Intensive Case Management o o o o o Conduct participant interviews Identify social and environmental barriers to diabetes self management Identify resources for patients Remind patients of appointments for care Track patient progress and report to physician

Baylor Health Care System: Diabetes Equity Project The Community Significant Hispanic population Language and health literacy needs Citizenship status may impede helpseeking and health care behaviors of some community members

Baylor Health Care System Diabetes Equity Project Approach to Patient Intervention Project Access Dallas: Extensive organization of volunteer health care providers 5 participating clinics refer patients to DEP CoDE: Community Diabetes Education Developed for use with uninsured Mexican-Americans Adapted for use with more diverse clinic settings

Baylor Health Care System Diabetes Equity Project The role of the community health worker is a significant aspect of the health care team Diabetes Health Promoter (DHP) DHP assigned to each participating clinic DHP is formal role incorporated in the BHCS

Baylor Health Care System Diabetes Equity Project New and Expanding Partnerships: Collaboration with Genesis Medical Foundation to provide dilated retinal screening at the 5 clinics Expanded relationship HTPN to brand 5 clinics as a subset with a special focus on the highest risk patients Plans underway to develop health information sharing with external health care systems

Camden: The Camden Citywide Diabetes Collaborative The Community High concentration of patients in relatively small geographical area (9sq mi) with limited health care providers Residents lives are very stressful and marked by hardship, high levels of poverty Population is primarily African American (49%) and Hispanic (39%)

Camden: The Camden Citywide Diabetes Collaborative Patient Level Intervention Five community-based clinics participate in standard DSME classes (based on ADA/ AADE guidelines) DSME program augmented with Conversation Mapping High-utilizer/ high risk patients are targeted through specialized Care Management Team

Camden: The Camden Citywide Diabetes Collaborative Patient Level Intervention: Care Management Team o Focus on highest utilizers (ED, hospitalizations) o Led my nurse practitioner o Licensed Social Workers

Camden: The Camden Citywide Diabetes Collaborative New Partnerships Camden Health Information Exchange: Data sharing among 3 major health care providers who were once competitors Allows physicians to provide timely quality care w/o duplicating care provided by counterparts Real time ED admissions will be linked by EHRs Follow up and transition of care is more efficient and timely Allows for coordination of care across health settings

Wind River: Improving Diabetes Among American Indians The Community Two distinct tribes share the Reservation Community residents and prospective patients are disbursed over a very wide geographical range (3500+ square miles) Community has limited resources/ food desert

Wind River: Improving Diabetes Among American Indians Patient Level Intervention: Indian Health Service is primary source of patient referrals Patient Education: Honoring Your Health: Diabetes Self-Management Education and Community Outreach Educational classes are available on very flexible schedules to meet the needs of the community

Wind River: Improving Diabetes Among American Indians Approach to Patient Level Intervention: Diabetes Navigators: Assist patients in communication and interaction in the health care system Diabetes Outreach Workers: Maintain contact with patients in the community environment (long-term goal to reach 1000+ diabetics on the Reservation)

Wind River: Improving Diabetes Among American Indians New Partnerships Wind River Diabetes Coalition Eastern Shoshone & Northern Arapaho Programs, Indian Health Service, State of Wyoming Diabetes Prevention Program, County Public Health Nurses, Products of the Collaboration: o Annual Diabetes Awareness Community Conference o Lifestyle Balance Program: Pre-diabetes o Enhanced working relationship between 2 tribes

University of Chicago Team Improving Diabetes Care and Outcomes on the South Side of Chicago

University of Chicago Improving Diabetes Care and Outcomes on the South Side of Chicago

South Side of Chicago Challenges: Poverty Social challenges Food deserts Unsafe recreation Mistrust of healthcare Weakened hospital safety net Strengths Historical social, political and cultural traditions Community resources and institutions Healthcare institutions

Health Care Interventions to Reduce Diabetes Health Disparities Patient interventions (e.g. CHWs) Provider interventions (e.g. practice guidelines) Support staff interventions (e.g. RN case manager) Health systems interventions (e.g. diabetes registries) Peek ME, Cargill A, Huang E. Diabetes health disparities: A systematic review of health care interventions. Med Care Res Rev. 2007;64(5):101S-156S.

Health Care Interventions to Reduce Diabetes Health Disparities Relevant take-home points: Culturally-tailored interventions more promising than standard QI Few multi-target interventions with community partnerships No existing literature on interventions that target the patient/provider relationship Peek ME, Cargill A, Huang E. Diabetes health disparities: A systematic review of health care interventions. Med Care Res Rev. 2007;64(5):101S-156S.

Intervention Components Six health centers 1) Patient activation training 2) Provider communication training 3) Community connections 4) Systems Change

Intervention Components Six health centers 1) Patient activation training 2) Provider communication training 3) Community connections 4) Systems Change

Patient ActivationTraining - Culturally tailored diabetes education - Patient/provider communication training - Shared decision-making - Patients equal partners about healthcare decisions - Improved health outcomes - Improved patient satisfaction - SDM disparities exist, despite similar role preferences

Patient Activation: Culturally tailored diabetes education - BASICS curriculum of the IDC - Evidence-based and theoretically driven - Core: - Basics - Nutrition - Physical Activity - Self-management - Four 2-hr sessions over 9 months

Patient Activation: Culturally tailored diabetes education - Modifications: - health literacy, adult learning theory, cultural tailoring - Reduced session length and increased total number - Reduced time between sessions - Used repetition throughout - Revised slides for literacy/numeracy - Audiovisual aids and interactive role play - Shared stories/narratives and testimony

Lowering Sodium 48

LOWERING YOUR SODIUM CHOOSE MORE FRESH FROZEN HOMEMADE TRY CHOOSE LESS CANNED PACKAGED PROCESSED INSTEAD OF

What is Diabetes? Role Play!

Mock Grocery Store Based on foods locally available Shopping in class Reading food labels Counting carbs Food preparation Shared recipes

Patient Activation: Shared Decision-Making - Specific skills: - 1) Ask more questions (information-seeking) - 2) Give more detailed information (information-prevision) - 3) Clarify/restate provider information (information verifying) - 4) State preferences for tests/treatment options - Mapped onto 3 SDM Domains - Reflect clinical encounter - 1) Information-Sharing (Discuss) - 2) Deliberation (Debate) - 3) Decision-Making (Decide) - ADA standards of clinical care

Patient Activation: Shared Decision-Making - Curriculum based on our research 1 - Interactive sessions - Role-playing and group discussion - Who wants to have a say in their healthcare? - Educational video - Integrated throughout BASICS - Dedicated focus during last 3 sessions 1 Peek ME et al. Patient Educ Couns. 2008; 72: 450-458. Peek ME, et al. J Gen Intern Med. 2009; 24:1135-9. Peek ME, et al. Soc Sci Med. 2010;71:13-17. Peek ME, et al. Soc Sci Med. 2010;71:1-9. Peek ME, et al. Medical Decision Making. 2011;31(3):422 431. Peek ME, et al. Self-reported racial discrimination in healthcare and diabetes outcomes. Med Care. In press.

Changes in Self-Efficacy Survey Question Number of Patients (n =21) I feel confident in my ability to manage my diabetes Baseline Strongly Agree / Agree 1 20 I feel capable of handling my diabetes Strongly Agree/ Agree 2 19 I am able to do my own routine diabetes care now Strongly Agree / Agree 1 20 I am able to meet the challenge of controlling my diabetes Post- Intervention P-value 0.02 0.03 0.02 0.22

Changes in Self-Management

Changes in Self-Management

Patient Intervention: Mobile Phone Pilot 4 week pilot at PCG (n=18) Text message reminders re: diabetes self-management Improvements in: Diabetes self-efficacy Self-foot examinations Medication adherence

Results: User Experience It was easy to receive and read the text messages from the research team. It was easy to send text messages to the research team. I found the text message reminders to be helpful at decreasing the number of pills I missed. I found the text message reminders to be helpful at increasing the number of times I checked my feet. I found the text message reminders to be helpful at decreasing the number of doctor Strongly Agree Moderately or Slightly Agree Disagree 94 6 0 72 28 0 89 11 0 89 11 0 87 13 0

Changes in Self-Efficacy 20.0 15.0 P<0.01 10.0 P<0.01 5.0 0.0 Pre During Post Series1 14.0 18.8 17.8

Community Connections: Resources

Community Connections Medical Homes Urban Health Initiative Over 4,000 pts connected to medical homes Public Education Television, Radio, Print Community health venues Center for Community

Community Connections: Partnerships KLEO Community Family Life Center Save-A-Lot Grocery Store Walgreen s Chicago Park District Farmer s Markets Chicago Food Depository

Grocery Store Tours Class graduates Reinforced skills re: food labels Save-A-Lot

Free Food Access Class participants Cooking demonstrations, tastings and recipes Health screening and education Chicago Food Depository KLEO Community Center

Improving Diabetes Care and Outcomes on the South Side of Chicago Roadmap Community Linkages Year 1: Scope out potential community partners/resources Year 2: Participate in events (CANTV, health fairs, screenings, etc) Year 3: Establish partnership with one organization (ex: fresh produce) Year 4: Pilot community health worker (CHW) or extension worker Year 5: Focus on sustainability for successful partnerships/outreach models Quality Improvement Year 1 (2009): Planning & form QI teams at each site Year 2 (2010): Start with small changes, use QI methods Year 3 (2011): Scale up successful project, plan & implement project w/larger scope Year 4 (2012): Implement QI projects in multiple Chronic Care Model areas Year 5 (2013): Focus on sustainability for successful projects Patient Empowerment and Education Classes Year 1: Finalize curriculum Year 2: Pilot curriculum (Access Booker site) Year 3: Spread classes to all sites Year 4: Spread classes to all sites Year 5: Focus on sustainability for classes at each site Patient-Centered Communication Workshop Year 1: Finalize workshop modules Year 2: Pilot workshop (PCG site) Year 3: Spread workshop to all sites Year 4: Spread workshop to all sites (booster workshops?) Year 5: Communication training role play

Our Project Team Marshall Chin Monica Peek Abigail Wilkes Tonya Roberson Anna Goddu Kristine Bordenave Michael Quinn Doriane Miller Lisa Vinci Andrew Davis Elbert Huang Jonathan Birnberg Jonathan Dick Shantanu Nundy Seo Young Park Neha Setha Emily Lu Rebecca Lipton Deborah Burnet Karen Kim Dawnavan Davis Sheila Harmon Quin Golden Eric Whitaker Shelley Scott Mickey Eder Peggy Hasenauer Louis Philipson Marla Solomon Hui Tang Robert Nocon Katie Raffel Ndang Azang-Njaah Gwen Burrows Braunda Anderson Marjorie Kerr