Diabetes Mellitus Interagency Coordinating Committee
Renaissance Mayflower Hotel
Roster of Speakers
AgendaTheme: Challenge and Opportunity: Eliminating the Racial and Ethnic Disparity in Diabetes Complications by 2010
|8:30 - 8:45 a.m.
||Welcome and Introduction
||Richard Eastman - NIDDK|
|8:45 - 9:00 a.m.
||The Challenge: DHHS Initiative on Racial and Ethnic Health Disparities
|Mark Smolinski - DHHS|
|9:05 - 9:30 a.m.
||Epidemiology of Racial and Ethnic Disparity in Diabetes
|Maureen Harris - NIDDK|
|9:35 - 10:35 a.m.
What Are the Agencies doing? What are the Unmet Needs?
|Moderator - Joan Jacobs|
Kathy Rufo - CDC
David Stevens - HRSA
Barbara Flemming - HCFA
Kelly Acton - IHS
Sandy Garfield - NIH
|10:40 - 11:40 p.m.
What Is Working?
What Are the Unmet Needs?
|Moderator - Yvette Roubideaux|
|12:00 - 1:00 p.m.
|1:00 - 2:00 p.m.
What Works and What Does Not
|Moderator - Roland Hiss|
Roland Hiss - DRTC
Faye Wong - NDEP
Dona Goldman - State DCP
Rita Starks - Project DIRECT
Esther Sciammarella - Promotora Project
|2:05 - 3:05 p.m.
||Break-out Groups with Facilitators
Identify 4-5 Strategies for Eliminating Disparities in Diabetes Complications
|3:10 - 4:10 p.m.
||Report from Break-out Groups
- Epidemiology of goal area;
- Causes of disease or condition (medical, social, health care delivery system failure, etc.);
- Effective interventions;
- Community programs;
- Strategies for engaging partnerships;
- Examination of existing programs;
- Data needs; and
- Evaluation of progress.
President Clinton requested $400 million over 5 years for the race initiative; for FY99 the proposed budget includes $30 million in community grants and a $50 million increase in current programs (HIV/AIDS, diabetes education, cardiovascular disease, prostate cancer, and others). Community grants will include community-based demonstrations (e.g., prevention, service delivery), evaluation of the effectiveness of science-based interventions, and grants to rural and urban areas and to various cultural settings, as well as grants for evaluation. Persons interested in learning more about DHHS's initiative can visit the department's Website (www.dhhs.gov).
Examples of DHHS's community outreach include the recent (July 10) Boston Town Hall meeting, the upcoming (September 10-11) Grant Makers in Health Conference (by invitation only), and the regional Healthy People 2010 2-day meetings to be held in September-December this year.
EPIDEMIOLOGY OF RACIAL AND ETHNIC DISPARITIES IN DIABETES
Dr. Maureen Harris, who is director, National Diabetes Data Group, in the NIDDK, presented data on these disparities. In the U.S., 25% of those with diabetes are not non-Hispanic whites. Among persons aged 40-74 years, non-Hispanic blacks and Mexican Americans have a 30-100% higher rate of diabetes than non-Hispanic whites. Within the Native American population, there is a wide disparity in rates.
Concerning diabetic retinopathy, one study found, after adjustment, that there was no difference in rates between whites and African Americans. Socioeconomic status does not seem important for retinopathy risk. Two studies found Mexican Americans to have a 70-120% excess risk for retinopathy, but a third (San Luis Valley) found a 60% lower risk. Native Americans have a substantial prevalence of retinopathy (24-49% among persons with type 2 diabetes).
For neuropathy, prevalences were found among persons with type 2 diabetes of 33.4% in nonHispanic whites and 40.2% in non-Hispanic blacks (not a significant difference); another study of persons with type 2 diabetes found a prevalence of 26.3% among non-Hispanic whites and 31.6% in Hispanics (also not significantly different).
Regarding nephropathy, one study found a relative risk (RR) of 2.6 among Mexican Americans for proteinuria (a predictor of nephropathy); another study found their RR to be 1.0. Socioeconomic status does not appear to affect the rate of nephropathy in Mexican Americans. For risk of end-stage renal disease, the RR for African Americans (versus whites) was found to be 2.2 and 2.4 in two studies; RRs for type 1 and type 2 diabetes were 1.0 and 4.3, respectively, in one of the studies.
In the United States, about 2/3 of new diabetic end-stage renal disease patients are white (includes Hispanics). Among Native Americans, the proportion of new ESRD cases due to diabetes varies; in the Navajo it is 50%; among Pima Indians, 72-93%. African Americans and Native Americans with diabetes and ESRD have longer survival rates than whites: For type 1 diabetes, median survival (in months) is 17.3 for whites and 26.9 for African Americans; for type 2 diabetes, it is 16.2 for whites and 30.4 for African Americans. For Pima Indians, the survival rate is 39 months for type 1 and 44 months for type 2.
In terms of lower extremity amputations, white patients with diabetes have 5.1 per 1000 per year; African Americans have 9.5 per 1000. Rates for Native Americans range from 6.9 to 26 per 1000.
Generally, diabetic whites have relatively higher rates of heart disease. Among persons with type 2 diabetes, the rate of angina was found to be 9.2% in whites and 6.2% in African Americans. For myocardial infarction, rates of 12.5% (white) and 10.6% (African American) were found in persons with type 2 diabetes.
Non-Hispanic African Americans with diabetes have about a 20% higher mortality rate than whites, but this differential is actually smaller than it is in the general population.
Factors for microvascular complications of diabetes include (a) greater glycemic exposure (younger age at diagnosis, longer duration of diabetes, use of insulin or oral hypoglycemics, higher glycosylated hemoglobin [HbAlc]); (b) higher systolic blood pressure; (c) cigarette smoking (in some studies); and (d) family history of renal disease (for nephropathy). There seems to be no interaction between race and risk factors. Age, sex, diastolic blood pressure, income, education, and socioeconomic status seem to have little effect.
Risk factors for cardiovascular complications include high blood pressure, dyslipidemia, obesity, and cigarette smoking.
How do risk factors vary by ethnicity? Non-Hispanic African Americans have a much higher rate of insulin use than whites or Mexican Americans. In terms of glycosylated hemoglobin, values above 8% were found in 35.7% of non-Hispanic whites, 40.8% of Mexican Americans, and 45.7% of non-Hispanic African Americans. Mean fasting plasma glucose was found to be high in Asians and Mexican Americans and higher still in Native Americans. African Americans and Mexican Americans are younger at diagnosis (type 2), and African Americans have a longer duration of disease than whites.
In terms of hypertension, using rather strict criteria, 46.9% of whites and 54.8% of African Americans with diabetes were hypertensive (the differential is larger in the general population). Hypertension is markedly lower in Hispanics. Using more liberal criteria, 72% of whites and 82% of African Americans with diabetes were found to be hypertensive; rates were much lower in Hispanics. For lipids, whites have the worst record.
In summary, for people with diabetes, microvascular complications are relatively more common in African Americans, Hispanics, and Native Americans than in whites. Conversely, cardiovascular disease is less common in minorities. Reducing risk factors should eliminate most of the disparities by race or ethnic group.
In discussion, Dr. Harris stated that whites, African Americans, and Mexican Americans with diabetes appear to have equal access to care, but the relative quality of that care is not known. There is very little information on Asian Americans (natural history of the disease, complications, etc.); Dr. Harris noted that Asian Americans are a very disparate group.
REPORTS FROM THE FEDERAL AGENCIES: WHAT ARE THEY DOING, WHAT ARE THE UNMET NEEDS?
CDC Activities. Kathy Rufo, deputy director of the Division of Diabetes Translation (DDT) at CDC, reported that DDT translates research findings into practice. DDT is implementing public health-oriented diabetes control programs, one component of which is surveillance (Behavioral Risk Factor Surveillance System [BRFSS], National Health and Nutrition Examination Survey [NHANES], the division is also assessing the feasibility of performing sentinel surveillance in special populations. Together, CDC and the states have developed state diabetes control programs. CDC tries to influence the health care system; it does not provide health services directly. The agency supports science-based activities and targets high-risk populations.
CDC funds community-based strategies, including the Promotora model (which uses lay health promoters), Project DIRECT an (African American community project in Raleigh, NC), and national minority-based organizations (CDC collaborates with the Congress of Black Churches). CDC is funding a multi year intervention study to establish a behavior science base for developing family-centered programs; it is also Finding a study to examine how people are diagnosed. Finally, the agency will be publishing the Guide to Community Preventive Services.
The National Diabetes Education Program (NDEP), in which CDC and NIDDK are partners, targets minority populations and other groups. CDC has established the National Hispanic/ Latino Diabetes Initiative for Action. It is also funding two "Diabetes Today Centers;" one will be in the Pacific Basin. These centers offer "training for trainers." CDC and the Indian Health Service are establishing in New Mexico the National Diabetes Prevention Center for Native Americans.
Unmet Needs. Ms. Rufo identified needs for the following:
- Better surveillance data;
- Fully funding and operationalizing the NDEP;
- Developing an inventory of effective community interventions;
- Funding and working more with national minority-based organizations; and
- Collaborating more closely with partners (including nontraditional partners).
Indian Health Service. Dr. Kelly Acton, director of the IHS's Diabetes Program, reported that diabetes is epidemic among American Indians and Alaska Natives and is overwhelming the IHS. The IHS uses a public health approach to diabetes and focuses on epidemiology. It has developed diabetes registries and has a computerized ambulatory care database, which helps determine complication rates. The IHS focuses on improving quality and comprehensively audits the charts of diabetes patients.
In a study of the population aged 65+, patients served by the IHS did better than the general population on benchmarks of care (e.g., receiving an eye examination). IHS collaborates with DDT-CDC, with NIDDK-NIH, with the International Diabetes Center, with the ADA, with universities and tribal colleges, and with the Department of Defense, which is funding a diabetes education project.
There are 12 IHS areas, each of which has a diabetes consultant (usually a physician). IHS has 19 model diabetes programs. In general, the IHS places a great emphasis on education.
The Balanced Budget Act provides $150 million over 5 years for the IHS to work on type 2 diabetes; so far, there are 312 grant applicants (note: the same act provides $150 million for type 1 diabetes research nationally).
Unmet Needs. Dr. Acton identified several unmet needs:
- IHS must obtain additional resources, first and foremost, to increase its delivery of quality care. It needs more resources to do active screening and implement community-based lifestyle programs; in addition, the IHS simply cannot afford the drugs it needs. It also needs money to buy strips and meters for self-management.
- IHS also has unmet data needs.
Dr. Acton also noted the importance of self-determination; tribes want to direct what happens in their communities.
HRSA Activities. Dr. David Stevens, chief of the clinical branch of the Division of Community and Migrant Health in the Bureau of Primary Health Care within HRSA, described health center programs funded by that agency. Over 700 health centers are funded, which serve 10.4 million persons, mostly minorities. Overall, 27% of patients are African American, and 31% are Hispanic. Sixty-five percent of patients are below the poverty level. Annually, there are 1.2 million visits for diabetes.
In a study in which nine elements of care for diabetes were abstracted, the Bureau of Primary Health Care exceeded the norm on five. It was significantly below norms on eye exams. Organizational correlates of quality are the presence of a patient educational department (could be just one person), having a diabetes educator, having diabetes dietitians, and having a flow chart for improvement.
Diabetes will be the first focus of HRSA's Health Status and Performance Collaborative. Dr. Stevens mentioned goals of decreasing or delaying the complications of diabetes and demonstrating the economic burden it imposes. In terms of improving outcomes, he mentioned working on self-management support (involves the family), decision support (clinicians), delivery system design, and clinical information systems.
Unmet Needs. Dr. Stevens made several recommendations:
- Increase resources to the community health centers to enhance their ability to provide services.
- Develop the capacity for improvement at these centers.
- Utilize the knowledge base that is not being used.
NIDDK Activities. Dr. Sandy Garfield reported that NIDDK has supported research on preventing the onset of diabetes and on preventing and treating its complications; considerable research directed at minority communities has been supported.
In terms of larger programs, the NDEP, in which NIDDK and CDC are partners, was launched June 23, 1998. In addition, NIDDK is supporting the "African American Study in Kidney Disease," which is investigating ACE inhibitors and calcium channel blockers. Also, NIDDK is supporting a study to see whether reducing obesity will lead to better health outcomes in terms of macrovascular disease.
The Diabetes Prevention Program is conducting a randomized clinical trial to see whether type 2 diabetes can be prevented in high-risk persons. Prevention seems feasible: the onset of type 2 diabetes is preceded by a long asymptomatic period; screening is inexpensive; and there are safe, potentially effective interventions to prevent onset. A secondary goal is to prevent complications. Having impaired glucose tolerance is the primary eligibility criterion; 50% of study subjects must be minorities. Dr. Garfield noted that, versus whites, African Americans have a disease risk of 1.5 to 2.0; Hispanic Americans, 2 to 3; and Pima Indians, 7 to 10.
Study interventions must be applicable to diverse populations; drugs tested must be efficacious and safe. The three arms of the study are (a) intensive lifestyle (subjects are told to lose 7% of bodyweight and to increase exercise); (b) taking the drug metformin; and (c) placebo; this group will receive a control drug and will be given information on lifestyle. Originally, a fourth arm was included (the drug troglitazone); this arm was stopped because of problems with that drug.
Of the population screened, 10% are Hispanic; 24%, African American; 7%, Asian or Pacific Islander; and 8%, American Indian. Of those randomized, 15% are Hispanic; 18%, African American; 7%, Asian or Pacific Islander; and 4%, American Indian.
Unmet Needs. Needs identified by Dr. Garfield included:
- Determination of the genetic risk factors for diabetes;
- Funding for NDEP;
- Enhanced quality of care;
- Studies in communications with special populations;
- Additional survey data; and
- Effective partnerships.
Dr. Eastman mentioned from the floor that a workshop will be held on genetic risk factors for diabetes. Mary Clark, of The Link, Inc., suggested in discussion that minority research institutions be involved and recommended that minorities assume decision making positions.
THE COMMUNITY PERSPECTIVE
Native Americans. Dr. Yvette Roubideaux, of the Association of American Indian Physicians, reminded attendees of the diversity of the American Indian population, which has more than 500 sovereign nations. A member of the Rosebud Tribe in South Dakota, Dr. Roubideaux is not an elected tribal leader; a formal consultation process is needed to work with the Tribes.
In the American Indian community, children as young as 5 years have been diagnosed with type 2 diabetes. Unfortunately, diabetes is seen as an inevitable "rite of passage." Yet, 100 years ago American Indians did not have diabetes. Diet and exercise patterns have changed in the interim; Dr. Roubideaux stated that genetic research is not the answer.
Unmet Needs. Resources are the major problem; there are not enough to provide basic care, and patients cannot get involved in self-care. The four highest priorities are as follows:
- Increased Finding for prevention and treatment;
- Increased funding for research and data on or evaluation of what works, especially preventive and community-based interventions;
- Increased funding for culturally appropriate diabetes education (current materials are too technical and culturally inappropriate)--the NDEP and minority-based organizations should be more fully funded as well; and
- Increased funding to develop strategies for effective consultation and partnerships with tribal leaders.
African Americans. Mary Clark, of The Links, Inc., noted her approval of the recommendations of Kathy Rufo (CDC) and Yvette Roubideaux (American Indian community).
What Works. Ms. Clark recommended a more comprehensive approach to reducing racial disparities:
- Look at multiple channels and messages that address diversity within the African American community--this may involve the radio, television, church, community health centers, barbershops, beauty salons, etc.
- Make your approach intergenerational (family-centered).
- Make things experiential (hands-on), for example, prevention must be experienced.
- Make your approach part of the daily routine.
Ms. Clark suggested undertaking an integrated approach with an emphasis on a healthy lifestyle. She noted that various health messages need to be tied together; people are in overload--there is a "disease of the hour" phenomenon. One might consider taking a combined, integrated approach to preventing cardiovascular disease, colon cancer, and diabetes rather than treating them separately. Ms. Clark noted that diabetes is not a "big deal" in the African American community and remarked that people have priorities other than diabetes.
Ms. Clark also stressed the importance of a culturally appropriate approach, with African Americans taking a lead role.
Unmet Needs. Ms. Clark identified several needs:
- Comprehensive funding for community-based organizations.
- Health and dietary messages should be integrated.
- Data collection and analysis as well as the development and implementation of interventions.
- The uninvolved must be involved.
Asian American. Stephen Jiang, executive director of the Association of Asian Pacific Community Health Organizations (a consortium of community-based health centers), noted the tremendous diversity in the Asian American population. For example, Asians are extolled as a "model minority," yet the Hmong, for example, have extraordinary economic problems, and gang violence is rife among the Southeast Asian population.
What Works. One-stop shopping (including education) works; segregating services is not good. Other approaches that work include the following:
- Integrating traditional healers and practices;
- Providing dietary information for the traditional diet (Asians with diabetes have had to switch to mainstream diets to follow recommended intakes);
- Recognizing the importance of community, not stigmatizing the person with diabetes as someone different;
- Increasing provider awareness, for example, of risk factors for Asians;
- Appealing to cultural values; and
- Being consistent in the information provided to the patient by physician, nurse, or dietitian.
Unmet Needs. Mr. Jiang listed several areas where there are significant deficits:
- Data on Asians are unavailable, and data collection is inappropriate (e.g., NHANES conducted in English or Spanish only).
- More targeted programs and services are needed.
- There is a dearth of trained professionals; many Asian professionals do not practice in the Asian community.
- Funding is needed for basic services.
- Research is not being translated into clinical practice.
Hispanics. Eliana Loveluck, project director of the National Coalition of Hispanic Health and Human Services Organizations, cited the comments of Mary Clark relative to the importance of an integrated approach. Ms. Loveluck's organization emphasizes community-based solutions, being representative of all Hispanic subgroups, and not accepting money from alcohol or tobacco companies.
In terms of diabetes, the coalition has provided technical assistance for workshops and conferences and launched initiatives on nutrition information, weight loss, and prevention (including provider education) for Hispanics. Among Hispanics aged 45 to 74 years, 14% have type 2 diabetes (24% of Mexican Americans in this group do). Hispanics have an earlier onset of diabetes and higher risks of both developing it and dying from it.
What Works. Ms. Loveluck recommended the following:
- Take an integrated approach to diabetes.
- Put diabetes in a larger context.
Unmet Needs. Ms. Loveluck identified several unmet needs:
- Good data on Hispanics are missing, particularly for Puerto Ricans and Cuban Americans. The NHANES III included Mexican Americans but not other Hispanics.
- Improved access to services is needed: having health insurance coverage and having a regular source of care are determinants of access. Three of every eight Hispanic workers do not have health insurance. Cultural values are also important in improving access.
- Programs are not incorporating Hispanic community-based organizations in their outreach efforts. Spanish-language radio and TV are very important for Hispanics and should be used.
- The NDEP should be fully funded.
Further Discussion. The issue of a match between the federal and community presentations was raised. A response from the community group was: "Don't do it to us, do it with us." Mary Clark noted the success of the seatbelt campaign and stressed that we simplify the diabetes message around lifestyle, including physical activity and diet. Overload on physicians was also discussed. Dr. Smolinski asserted that the racial/ethnic disparities ultimately come down to income; he cited a recent article in JAMA Lantz PM, House IS, Lepkowski JM, et al. Socioeconomic factors, health behaviors, and mortality: results from a nationally representative prospective study of US adults. JAMA 1998;279: 1703-8) to support his point.
INTERVENTIONS: WHAT WORKS AND WHAT DOES NOT WORK?
Dr. Roland Hiss of the University of Michigan offered three reasons why things don't work:
- We overload the primary care physician, for whom diabetes is a frustrating problem.
- Prevention strategies are not well handled by the acute care system, but prevention is the core of diabetes care.
- We do not have a delivery system for long-term, continuous preventive services.
On the other hand, public education works, and involving providers, including nontraditional providers, works. Dr. Hiss distributed a table on the Michigan Community Diabetes Program; he pointed out that while being uninsured was common among whites, it was also common among nonwhites. Following Dr. Hiss's remarks, representatives of selected diabetes programs gave presentations.
NDEP. Faye Wong, who is associate director of the DDT at CDC, noted that CDC and NIDDK have many partners in NDEP. Program components include an awareness campaign, community interventions, health systems, and special populations. The awareness campaign has five work groups: principles of diabetes, diabetes risk tables, team approach to care, business and managed care, and the Health Care Financing Administration. Among the barriers identified by minority partners in NDEP have been the lack of culturally sensitive materials, language, use of the language, access, inadequate involvement, and minimal commitment of minorities.
The "special population" component of NDEP has four workgroups: Hispanic/Latino, African American, American Indian, and Asian American and Pacific Islander. Minority work group activities have included audience profiles, creative guidelines, concept development and teaching, storybook development and teaching, material development and pretesting, strategic partnerships, community intervention development, and program implementation.
Ms. Wong noted that in the Hispanic community, fatalism and family are important; health messages should contain a hopeful message.
Ms. Wong raised the issue of common access points for minority populations--what are they? She also urged creative minority partnering.
What Works. Ms. Wong noted that the following "work" in the NDEP:
- Approaching program development from the viewpoint of the target population;
- Involving minority partners in leadership roles;
- Involving trusted and valued messengers;
- Involving trusted and valued delivery channels to promulgate messages; and
- Actively involving minority partners and populations in programs that affect them.
What Does Not Work. Culturally insensitive materials, not involving members of targeted communities, using inappropriate language to communicate. In the Hispanic community, using messages that provide no hope.
Unmet Needs. Ms. Wong identified several needs or recommendations:
- Create opportunities and empower minority partners to take an active role in their own communities.
- Pursue traditional and nontraditional partners.
- Provide guidelines and tools.
- Involve minority experts in training.
- Fund effective minority-focused community-based interventions.
- Conduct applied research on effective community-based interventions.
- Evaluate progress.
State Diabetes Control Program. Ms. Dona Goldman, who directs the diabetes control program in Rhode Island, reported that it began in 1994 to develop a Diabetes Today program with a goal of customizing approaches. In Rhode Island, Hispanics, who are the fastest-growing minority in the state, want to be called the Latino/Hispanic population. Ms. Goldman noted that the number of undocumented people in the state is very large.
Two focus groups were held to identify problems in the community. Barriers identified included rapid growth of the population, poverty, and discrimination; skepticism, distrust, and fear; and a lack of bilingual, bicultural providers. "Training the trainers" is an important part of the Rhode Island program.
The Diabetes Today (renamed Diabetes Hoy) program was held at the Pawtucket City Hall. Where you hold a program is important; Ms. Goldman noted that the mayor of Pawtucket got involved. Hospitals are good locations for programs as well. Communication is important; Rhode Island's program has a bimonthly newsletter.
What Works. Ms. Goldman expressed her approval of Ms. Clark's recommendations; programs should do the following:
- Be intergenerational;
- Be experiential;
- Make things "routine";
- Take an integrated approach; and
- Be culturally appropriate.
Ms. Goldman used the example of bringing mammography, Pap smears, and diabetes together. She also stressed the importance of creativity. Good, regular communication is also important.
What Does Not Work. Not using culturally or linguistically appropriate providers and holding programs at inappropriate sites do not work.
Unmet Needs. Ms. Goldman identified the following needs:
- Resources must be increased. Before they are provided, we must focus on what we can do "in the meantime."
- More bilingual, bicultural providers.
Project DIRECT.Ms. Rita Starks explained that Project DIRECT involves a coalition of communities, the media, industry, and colleges and universities. The program partners with the African American community of southeast Raleigh, with the division of community health for the state of North Carolina, with Wake County (Raleigh's county), and with CDC.
Project DIRECT, the largest community diabetes demonstration project in the United States, seeks to reduce risk factors, improve the identification of people with diabetes, and improve quality of care. Its components include diabetes care (working with clinics in southeast Raleigh, self management, support groups), health promotion (physical activity, diet), and outreach.
Successes of the program have been increased knowledge, increased local capacity to provide diabetes care, increased community awareness, and the fact that the program is community driven. Lessons learned include the importance of networking, the value of community involvement, taking care not to rely too much on volunteers, and the importance of nurturing each stage of a project before going on to the next.
What Works. Developing partnerships and having the community drive the program both work.
What Does Not Work. ( 1 ) Over relying on volunteers and (2) trying to add new program elements before solidifying existing elements.
Promotora Project. Ms. Esther Sciammarella, special assistant to the Health Commissioner for Hispanic Affairs in Chicago, manages the Promotora Project. She discussed using the media, training, advocacy (she has worked with the ADA on a lobbying effort), publications, and a health opinion survey. Her office has worked with the University of Chicago and with Northwestern University on the research process, including the collecting of data. In the survey, the cost of service and long waits were expressed concerns; respondents were interested in nutrition, weight loss, and exercise. A "nutrition and exercise program for the Hispanic woman" was developed and carried out.
What Works. Ms. Sciammarella made several recommendations:
- Community people must be involved.
- Programs should have paid community workers. In Chicago, a door-to-door outreach program is conducted that relies on paid community outreach workers; Ms. Sciammarella recommended paying community people to learn how to "navigate" patients.
- Join with others to engage in advocacy.
What Does Not Work. Community programs that don't involve the community.
Discussion. Responding to a question about in-kind support, Rita Starks mentioned support from the Wake County (NC) health department, contributions from the community and radio stations, contributed time from community people, and a health fair. Faye Wong noted that people have contributed their time and expenses. Esther Sciammarella mentioned support from a newspaper and from hospitals. Dona Goldman mentioned contributions from pharmaceutical companies and private funding of screening.
To a question about what impact she would wish her program to have 5-6 years from now, Faye Wong mentioned improved outcomes as measured by glycosylated hemoglobin; she also mentioned the airing of public service announcements about diabetes by television stations. Dr. Hiss indicated that the percentage of diabetes patients who were in an appropriate long-term care system would be a good measure. Rita Starks mentioned three areas: patients would go to physicians and know what they should get in terms of care; people in the community would ask to be screened; and there would be positive signs of health promotion (e.g., churches would serve nutritious foods, people would be out walking). Dona Goldman said she would like to see adherence to the standards of diabetes care.
BREAK-OUT GROUPS: STRATEGIES FOR ELIMINATING RACIAL OR ETHNIC DISPARITIES IN DIABETES
Attendees split into two groups to develop lists of strategies.
Group 1. Group I recommended eight strategies:
- Increase federal funding for community interventions.
- Improve the quality of basic diabetes services.
- Fully fund the National Diabetes Education Project.
- By incentives or other means, influence some physicians to practice in geographic areas where diabetes patients are underserved; improve the career ladder of nonphysicians to enhance their ability to deliver diabetes services.
- Increase access to appropriate care. This recommendation had many elements: providing access to providers who understand what the patient is saying, increasing access to appropriate specialists, establishing ongoing relationships with physicians, improving the ability of generalist physicians to care for diabetes patients, working with the Medicare program to improve care for diabetes patients, developing nurses and health educators. It was pointed out in the group's discussion that statistics indicate that racial and ethnic disparities in diabetes apparently do not result from differential access.
- Fund demonstration projects and research on what works in community interventions. This recommendation included support systems as well (i.e., which kinds work?). Examining nontraditional approaches was also suggested. We should look at how evaluation is done, be more accepting of qualitative data, and get community input in the evaluation process.
- Educate the public about the seriousness of diabetes.
- Integrate and coordinate efforts to reduce racial/ethnic disparities in diabetes. The group working on disparities in diabetes should coordinate with the other five groups (e.g., immunizations) working on targeted areas. Perhaps all six disease areas have a common route for improvement. We need to integrate messages. Furthermore, we need to coordinate with groups outside the race initiative, such as those who are updating Healthy People 2000.
Group II. Group II also made eight recommendations:
- Improve data collection: (a) We need good standards, a common language, baseline data for subgroups, and consistency across racial and ethnic lines. (b) The federal agencies should take a unified approach to collecting, analyzing, and disseminating data on racial/ethnic disparities.
- Address access to quality care: (a) We should develop uniform measures of access. (b) In addition, the federal agencies need adequate resources to ensure quality of care. (c) Special funding should be provided to develop and test models for evaluating the care of minority populations.
- Do research to address gaps in our knowledge. Are we making progress, for example, in decreasing cardiovascular complications?
- Study the translation of research into practice. Perform timely testing in various areas. Determine what is effective. Are behaviors changing?
- Build traditional and nontraditional partnerships, especially with community-based or community-driven coalitions.
- Work with chronic disease partners to ensure a consistent, common core message to public and to providers.
- Integrate minority initiatives with health disparity issues.
- Fully implement the NDEP.
The meeting was characterized by a good deal of consensus. Dr. Hiss noted that defining quality of care for diabetes would be helpful. A holistic approach is good. A draft will be produced quickly on the diabetes initiative.