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Fostering Rapid Advances in Health Care: Learning from System Demonstrations (2003)

Chapter: 2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities

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Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
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Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
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Page 28
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 29
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 30
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 31
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 32
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 33
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 34
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 35
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 36
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 37
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 38
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 39
Suggested Citation:"2. Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities." Institute of Medicine. 2003. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Washington, DC: The National Academies Press. doi: 10.17226/10565.
×
Page 40

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- ~ Chronic Care: Reducing the Toll of Chronic Conditions on Individuals and Communities SUMMARY DESCRIPTION Demonstration projects in this category are intended to improve the quality of care for individu- als with one or multiple chronic conditions in a particular geographic area. The projects are expected to result in changes at two levels: (~) redesign of the delivery system to provide care that is ongoing, is coordinated across multiple providers (both acute and Tong-term care providers and social services), and supports patient self-management; and (2) implementation of community-wide educa- tional and other initiatives designed to improve population health. Changes in both areas will involve extensive use of 2ISt-century information and communications technology (ICT). The committee suggests that demonstrations initially focus on Medicare beneficiaries, with the objective of expanding to all payers and even the uninsured over time. These demonstrations would be community-based (although some may be state-wide or even multistate efforts). Regardless of the geographic area, state collaboration would be important because many Medicare beneficiaries are also eligible for Medicaid. The Department of Health and Human Services (DHHS) would issue a Request for Proposals (REP), and a limited number of demonstration sites (10-12) would be selected from the applicants Applicants might be a consortium of providers (e.g., medical groups, hospitals), a health plan, an academic health center, a professional or trade association, or other establishecl health care organization. Each selected applicant would receive a 1-year planning grant to accom- plish two objectives: establishment of a public-private partnership and development of a 3-year implementation plan. The public-private partnership should encompass all major stakeholders, including consumer groups, health care professionals, health care and social service organizations, the public health community, state government, and others.

~ Chronic Care The demonstration projects would be 4 years in duration (including the 1-year plan- ning period). Measurable improvements in care delivery should be achieved within 2 years. Over the long haul, the objective is to achieve a lessening of chronic illness burden in a commu- nity. These demonstrations are intended to be budget neutral over the long term (exclusive of up-front federal capital investments in ICT). BACKGROUND A chronic condition is defined as "a condi- tion that requires ongoing medical care, limits what one can do, and is likely to last longer than one year" (Partnership for Solutions, 2002a, p. 1~. An estimated 120 million Americans have one or more chronic conditions; more than half of these people have multiple such conditions. People with chronic conditions account for the majority Chronic illness affects all age groups and also leads to reduced worker productivity and lost of overall health care spending. time from school for children (National Acad- emy on an Aging Society, 20004. Some chroni- cally ill patients have inadequate or no health insurance, and these individuals receive less care and have higher out-of-pocket expenditures than they should (Partnership for Solutions, 2002b). Some patients with chronic conditions experience disability and functional limitations (e.g., hearing loss, visual impairment, loss of mobility), including cognitive impairment and other geriatric syndromes that severely under- mine quality of life and pose a threat to inde- pendence. The 5 million Medicare beneficiaries who are under age 65 and disabled fall into this category, as does an increasing proportion of over-65 Medicare beneficiaries, sometimes referred to as the "frail elderly" (Gluck and Hanson, 2001) (see Table 2-1~. These individuals require ongoing treatment of a specific diseased), but this treatment is not sufficient. C are fu] management of geriatric TABLE 2-1 Prevalence of Chronic Conditions, Disability, and Functional Limitations Age 65-74 75-84 85+ None ofthe Three Problems I 17% 10% 4% Chronic Conditions Only Disability Only Functional Limitations Only Any Two of the Three Problems 5 1% 37o/o 17% 2.1% 2.1% 3% 0.4% * 22% 32% 32% AH Three Problems 8% 1 9% 44% SOURCE: Partnership for Solutions, Johns Hopkins University analysis of 1996 Medical Expenditure Panel Survey, unpublished data; also in American Association of Retired Persons (2002~. ~ ~~ _ ~ . , ~ ~ ~ ~ ~ ~ ~ ~ . . ~ . . . . . I no NOTE: This table makes use of the following definitions to estimate the prevalence of three types of health problems chronic conditions, disability and functional limitations. Chronic condition has lasted or is expected to last 12 months or longer and either (1) involves ongoing medical care or (2) places limitations on age-appropriate task performance, basic self-care, independent living skills, or social interactions. Functional limitation- the need for help or supervision with any activities of daily living or instrumental activities of daily living. Disability includes any one of the following characteristics: (1) the use of assistive technology; (2) difficulty walking, climbing stairs, grasping objects, reaching overhead, lifting, bending or topping, or standing for long periods of time; (3) any limitation in work, housework, or school; (4) social/recreational limitations; (5) cognitive limitations, such as confusion or memory loss, or decision-making problems that lead to interfer- ence with daily activities or require supervision to ensure one's safety; (6) vision problems; and (7) dearness or difficulty in hearing. . ~ . . ~ ~ . .

Chronic Care syndromes (e.g., cognitive decline, lack of resil- ience, undernutntion, loss of mobility) and attention to the patient's social and environ- mental circumstances are needed to preserve maximum levels of independence and slow the progression of disability (Buchner and Wagner, 1992; Welch et al., 1996~. For many with chronic conditions, navigat- ing the complex health care system can be difficult, sometimes even distressingly so. The chronically ill typically require care from multi- ple clinicians (both primary care providers and specialists) and across multiple sites (e.g., hospital, nursing home, in the community with or without home care), and this care is generally not well coordinated. Moreover, in the current highly decentralized, paper-driven health care system, clinical information (e.g., diagnoses, test results, medications, specialty consults) is frequently unavailable when needed. The chronically ill experience many prob- lems with access to care and avoidable compli- cations of care. In a recent survey of chronically ill individuals, about three of four respondents reported difficulty with obtaining medical care; specifically, many experienced difficulty getting care freon a primary care physician (72 percent) or a medical specialist (79 percent), as well as obtaining prescription drugs (74 percent) (Partnership for Solutions, 2002c). Nearly 20 percent of Americans report problems commu- nicating with their clinicians (Collins et al., 2002~. The lack of coordinated care results in chronically ill people receiving inconsistent and contradictory information and experiencing many avoidable complications (Partnership for Solutions, 2002a, 2002c). All of these problems are likely exacerbated for those chronically ill who are disabled, frail, and/or have cognitive impairments. devoted to direct medical care services, mainly for the treatment of people with chronic diseases (McGinnis et al., 2002~. Very few resources are devoted to reducing the unhealthy behaviors that currently contribute to about 40 percent of deaths in the United States (McGinnis et al., 2002), including poor dietary habits, lack of physical activity, smoking, and excessive alcohol consumption. The health care delivery system must take greater responsibility for promoting healthy life- styTes. The personal health care system has a role to play in educating individual patients and providing supportive interventions (e.g., coun- seling, nicotine patches), but the personal health care system reaches only those who seek health services, many of whom have already suffered serious and irreparable damage as a result of poor health behaviors. Broader-based interven- tions are needed to reach the entire population of a community before harm has occurred. It is unrealistic and inefficient to expect providers acting individually to address all population concerns. They do not have the financial resources, incentives, or expertise to do so. Some health plans have attempted to focus greater attention on the prevention of chronic diseases for their members, but many people are not enrolled in comprehensive health plans. In many communities, moreover, the frequent turnover of enrollees attenuates incen- tives to focus on interventions that can produce substantial long-term benefits in terms of improved health status. Collaborative commu- nity-wide efforts are needed, as are specific interventions to align provider financial incen- tives in ways that reward the provision of high- quaTity care. Improving care for people with chronic conditions must be a high priority, but improved care alone is not enough. The health care system must focus far more attention and resources on community-wide interventions aimed at preventing or at least slowing the onset and progression of these conditions. About 95 per- cent of health care expenditures is currently GOALS The primary objective of the demonstration projects in this category is to improve the quality of care provided to the chronically ill and to reduce the burden of disease and disabil- ity in a community. Specific goals include the following: [~1~

f Chronic Care 1. The right care at the right time in the right setting State-of-the-art, science-based care for the patient's condition or conditions Elimination of underuse (i.e., the failure to provide services from which the patient would likely have benefited) and overuse (i.e., the provision of services that expose patients to more harm than good) Emphasis on primary, secondary, and tertiary prevention Enhanced management and coordina- 6. Improved coverage tion of chronic conditions (e.g., ease of access to appropriate providers) 2. Improved patient safety Decrease in errors Decrease in avoidable hospitalizations Improved medication management 3. Enhanced patient role and satisfaction Promotion of shared responsibility for health (e.g., support for healthy behav- -iors and lifestyles) Improved self-management of chronic conditions Increased health literacy and under- standing of care plans Informed decision making j: ,, Improved communication among team members and between patients and team members Shared values and goals among team members Increased satisfaction on the part of health professionals 5. Reduced clinical waste Decrease in overuse Reduced use of services to treat compli- cations arising from errors Improved satisfaction of patients and informal caregivers (including manag- ing burden and providing respite for informal caregivers) Customized care not one size fits all, but care that takes account of patient preferences, culture, family circum- stances, and needs 4. Enhanced workforce productivity Development of effective multidiscipli- nary teams More appropriate benefit package for the chronically ill (e.g., coverage of prescription drugs, educational and support services) Coverage of benefits for which there is evidence to substantiate effectiveness Coverage for some chronically ill indi- viduals who otherwise would have been uninsured 7. Establishment of a strong public-private partnership Healthier community measurable decrease in the incidence of chronic conditions and the associated disease burden Improved capabilities at the state and community levels to address health care issues and to collaborate and invest in health system improvements DEMONSTRATION ATTRIBUTES It is anticipated that demonstration projects in this category would focus initially on a subset of Medicare beneficiaries, perhaps those with one or more conditions requiring intensive ongoing management. Over time, however, the projects would expand to include all of the chronically ill. Demonstrations would include interventions falling into two broad categories: (1) redesign of the personal health care delivery

Chronic Care system, and (2) establishment of community- wide health promotion initiatives. Initially' most attention will likely be focused on the first category. Over time, the demonstration sites should shift attention and resources to the second category, which has much potential to reduce the burden of chronic illness in a community. In the area of personal health care, demon- stration sites would be expected to establish comprehensive chronic care management programs including the following elements: . Evidence-based treatment programs for all of the leading chronic conditions that affect the population being served. Many individuals involved in the demonstration project will have more than one condition requiring active management. Services to detect and minimize the conse- quences of geriatric syndromes, including a decline in cognitive (e.g., Toss of memory) and physical (e.g., visual Toss, hearing impairment) functioning. . . .. Services to meet the preventive, acute, long- term care, and other health care needs of patients with chronic conditions. Extended outreach and coordination with social and environmental services, provided through formal (e.g., meals on wheels, senior centers, transportation services, assisted-living environments) and informal (e.g., faith-based institutions, family and friends) means. With regard to population-level health inter- ventions, prevention and management of chronic conditions often involve modifications in behavior (e.g., proper diet, exercise, avoid- ance of nicotine, moderate use of alcohol) Community-wide educational campaigns and other popuiation-leve! interventions may be the most effective way of accomplishing these objectives. Each demonstration project would involve five components: (~) establishment of a coordi- nating structure (or strengthening of an existing one), (2) development of chronic care manage- ment programs, (3) ICT support, (4) innovative approaches to payment and to recognizing and rewarding achievement, and (5) learning collaboratives and community-wide educational efforts. These components are discussed in turn below Establishment of a Coordinating Structure As discussed above, demonstration projects In this category are intended to lead to the estab- lishment of exemplary chronic care manage- mentprogramsforindividualsandcommunity- wide initiatives focused on improving popula- tion health. Accomplishing these objectives will require new structures that extend beyond the traditional personal health care delivery system. During the first year of the project, grant recipients would be responsible for establishing a broad-based coordinating structure with participation from all important stakeholders, including consumer groups; the medical community; hospitals; health plans; the public health community; local, state, and federal governments; the business community; and others. This coordinating structure should have (or develop) the capability to (~) provide strong leadership for the demonstration, (2) work with providers to organize chronic care management programs, (3) develop necessary ICT infrastruc- sure, (4) implement payment and quality moni- toring programs, and (5) provide knowledge management support and sponsor learning collaboratives. The committee recognizes that 1 year is an ambitious time frame for building a coordinat- ing structure, and encourages DHHS to consider selecting sites where some form of coordinating structure already exists. For example, a collabo- rative effort aimed at achieving sizable improvements in cancer care has been estab- lished in the state of Georgia (Georgia Cancer Coalition, 2002), and a diabetes initiative is

~ Chronic Care under way in New York State (IDEATel, 2002~. In other communities, an initial grant recipient may be an academic health center, a consortium of providers, or a professional or hospital asso- ciation with the potential to provide leadership and a commitment to establishing a broader- based structure; in these instances, however, the planning phase may need to be longer. In communities where medical groups, health plans, or other providers have developed or are seeking to develop chronic care manage- ment programs, such programs might serve as a strong foundation for broader community-wide efforts. The Centers for Medicare and Medicaid Services (CMS) also has disease management and coordinated care demonstration projects under way that focus on improved care delivery for specific beneficiaries through changes in payment, benefits, and organization of care (Centers for Medicare and Medicaid Services, 2002; U.S. Depatlt~ent of Health and Human Services, 2001~. These efforts, too, might repre- sent a strong foundation for a more expansive, community-wide effort. These types of health care delivery programs alone would not qualify as a demonstration. However, they might well constitute the first step toward establishing community-wide efforts with the capacity to provide coordinated health and social services, as well as community-wide educational and public health campaigns, and to cultivate a learning environment with the potential to contribute to greater health care redesign within a community (and ultimately nationwide). ;- During the first year, grant recipients would also be responsible for developing a comprehen- sive plan for the 3-year implementation phase of the project. This planning effort should result in a detailed operational plan specifying the patients to be enrolled, services to be provided, subcontracts to be initiated with vendors, cTini- cians and institutions to be involved, payment mechanisms, and community outreach and educational endeavors. If waivers from various state or federal regulatory requirements will be required (e.g., waivers from states' licensure requirements for health professionals to enable telecommunications services across a two-state 32 demonstration project, or waivers from state scope-of-practice acts to allow for multidiscipli- nary team management), these should be identi- fied and secured within the first 12 months. Strong leadership will be critical to the suc- cess of all the demonstration projects given the profound cultural and organizational changes that must occur within the health care commu- nity. There should also be a willingness on the part of health care professionals and organiza- tions to develop new relationships, especially ones that go beyond the boundaries of the tradi- tional medical care system. The mission and operations of health care organizations would need to reflect a greater commitment to both individual health care and population health initiatives. In many communities, health care providers would need to strike a new balance between collaboration and competition. It would be the responsibility of the leadership of the coordinating structure to identify cornmunity- specific barriers and to identify solutions (e.g., establishing coordination across insurance plans, forging relationships between existing disease management programs and the overall chronic care initiative). Development of Chronic Care Management Programs Unlike much acute, episodic care, effective care for the chronically ill is a collaborative process, best carried out through a systematic approach (don Korff et al., 1997~. Wagner et al. (1996) have identified five important elements of chronic care programs: . Eviblence-base~l, planned care Guidelines and protocols applicable to each of the lead- ing chronic conditions that affect the popu- lation being served must be incorporated into practice. Multidfisciplinary team approach—Delivery of care is generally through a multidiscipli- nary team (both health and social services) with well-def~ned relationships and respon- sibilities. Members of the team must have

Chronic Care flexibility in allocating time and resources to meet the needs of each patient for educa- tion and support. . . . :- Patient information There must be systematic approaches to providing counsel- ing, education, information feedback, and other support to patients (Brown, 1990; DeBusk et al., 1994; Mullen et al., 1987~. Clinical knowledge and expertise Both patients and clinicians should have ready access to knowledge and specialized exper- tise through such means as teleconferenc- ing, referrals to specialists, computer decision support systems, and collaborative care models (in which primary care provid- ers and specialists practice together at least some of the time) (Barton and Schoenbaum, 1990; Katon et al.' 1995; Litzelman et al., 1993; McCulloch et al., 1994; Vinicor et al., 1987~. Supportive information systems Effective mechanisms for sharing information among team members and between patients and team members (e.g., computer-based records, registries) are critical. Also helpful are systems that provide reminders for preventive care and necessary follow-up, and track patient compliance with treatment plans (Dickey and Petitti, 1992; Turner et al., 1990~. The coordinating structure would be respon- sible for working with groups of providers in the community to organize chronic care management programs. In nearly all cases, extensive team building would be required to forge closer and more collaborative working relationships among various types of health care professionals. A high priority should be placed on designing care processes that are sensitive and accommodating to the needs of health care professionals. The greatest success would come from the alignment of well-designed systems accompanied by financial and other incentives to motivate providers. Attention should also be focused on the design of programs and care processes that have the potential to reduce health disparities. In some communities, disease management programs sponsored by medical groups, health systems, or health plans may serve as initial building blocks. However, the chronic care management programs in these demonstration projects are intended to differ Tom typical disease management programs in several impor- tant ways. First, these programs are intended to serve beneficiaries with many different chronic conditions (and often with multiple conditions), while disease management programs tend to be limited to a specific disease. Second, these programs should provide for all of patients' preventive, acute, and chronic care needs, not just services for the treatment of a specific disease. Finally, those who develop programs would be required to participate in collaborative community-wide efforts focused on prevention and health promotion. Information and Communications Technology Support A major component of these demonstrations should be the expanded use of TCT to improve care for the chronically ill. Specifically, ICT would enable the following improvements: 1. Better communication Web-based dissemination of knowledge (relative to both specific diseases and chronic care management) Sharing of learning experiences between patients and clinicians, among clinicians, and among patients E-maiT communication between patients and clinicians and among clinicians Telemedicine, including the use of home monitoring devices (e.g., for glucose monitoring) that transmit results via the Web 33

i Chronic Care Provision of Web-based reminders (e.g., for flu shots, physical activity, and diet) to patients and clinicians Electronic health risk appraisal and feedback reports Ongoing patient communication with support groups Electronic access to patient records (as information becomes computerized), with appropriate safeguards for patient confidentiality 2. Chronic care registries Central repository for patients' care plans and other important health, cTini- cal, and service information Patients' access to their care plans in hart/copy or electronic form Real-time access to all information in the repository by patients and their providers to improve coordination and care delivery 3. Tracking and monitoring of patients' progress . Medication order entry systems- computerized prescriptions with centralized repository of information for patients 4. Creation of a "paperless" clinical environ- ment Reporting of results from laboratories and imaging centers Consults with specialists Emergency encounters Clinicians notes 5. Advanced decision support systems for clinicians and patients 34 11 All demonstrations should involve major advances in the first three areas listed above during the 3-year project. Some consideration should also be given to building on efforts already under way. Potential applicants that have already made progress in the first three areas would be expected to develop more advanced ITC capabilities in the last two areas above during the demonstration period. There might also be some opportunity to transfer the knowledge and technology devel- oped in a specific location to new demonstration projects starting up in other locales. One example of an initiative already under way is the diabetes telemedicine collaborative in New York State (IDEATel, 2002~. This project is led by Columbia University and includes several major medical centers, hospitals, and a home for the aged located in New York City and upstate New York; CMS; and the American Diabetes Association. CMS has provided a $28 million grant in support of this project, and vari- ous commercial vendors have made in-kind contributions, including home monitoring equipment and high-speed Bernet lines. A total of 1,500 patients have been enrolled in this randomized controlled teal; one-half are in the intervention group and the other half in a control group. Computers with devices that read blood sugar, take pictures of skin and feet, and check blood pressure are placed in the homes of those in the intervention group. Patients are responsible for checking their blood sugar, blood pressure, and other factors. They receive educational material on diabetes and specific recommendations, reminders, and instructions for managing their disease. The program builds on Columbia University's Web-based clinical record technology and uses an automated care guideline system to analyze patient data and issue automated alerts to clinicians when certain information varies from predetermined values. Patients have access to their own clinical infor- mation. Development of this TCT infrastructure would likely take place in phases over the dura- tion of the demonstration, but there should be a comprehensive plan and timeline for the devel- opment and deployment of various capabilities.

Chronic Care Innovative Approaches to Benefits, Copayments, Provider Payment, and Accountability Initially, these demonstration projects should focus on Medicare beneficiaries. Each site would establish eligibility criteria for participation in its demonstration project (e.g., beneficiaries with one or more of the five most common chronic conditions). Some sites may prefer to include all beneficiaries with chronic conditions from the beginning, while others may wish to start with a smaller subpopulation and expand at a later date. A major component of all of the demonstra- tion projects in this category would be the flexi- bility to innovate in such areas as benefits coverage, beneficiary copayments, provider payments, and accountability. Careful design, ongoing evaluation, and sharing of learning experiences in these areas of program design would be critical. Within the overall constraint of budget neutrality, demonstration sites should be given the flexibility to use Medicare funds in ways that would yield the greatest benefits in terms of improved patient and population health. One financing approach would be for CMS to provide the coordinating structure, with a capi- tation payment to cover all the care needs of the participating patients (i.e., preventive, acute, and chronic care). The coordinating entity should have the flexibility to provide the expanded benefits necessary for chronic care management. Regular Medicare does not cover certain services that are often important for care of the chronically ill, including patient education and support, telemedicine (e.g., e-mail, home moni- toring), and prescription drugs. For example, it may be possible through the coverage of prescription drugs and frequent monitoring of patients via e-mail to decrease office encounters and hospital episodes. In establishing an appro- priate capitation payment rate for a demonstra- tion site, CMS should strive to achieve budget neutrality and to correct geographic inequities in payment. The committee cautions CMS not to attempt to address cost concerns by setting capi- tation rates at levels that are unreasonably low or below current fee-for-serv~ce (FFS) expendi- ture rates. Participation of health plans in Medi- care + Choice program, which also uses capi- tated payments, has been declining and this may be because payment rates are lower than FFS expenditures and these plans are expected to provide enhanced benefits. CMS might also consider establishing a national payment rate for chronic care demonstration sites, with a geographic adjustment for differences in the cost of practice. This would correct for geographic variability in payment rates that is not tied to differences in cost of practice. The coordinating entity in each demonstra- tion site would be responsible for (~) determin- ing the amount of funds to be used for commu- nity-wide prevention and other initiatives, and (2) establishing payment methods for chronic care management programs. It would be impor- tant for each demonstration site to establish robust cost accounting systems at the level of both the coordinating entity and the providers of care. Demonstration sites would be encouraged to experiment with various provider payment methods, especially ones that reward perform- ance achievement. Numerous options have been identified for motivating providers to improve their performance (Bailit Health Purchasing, 2002~. For example, a capitation payment to a chronic care management program that enrolls beneficiaries with diabetes might be contingent, in part, upon achievement of certain predeter- mined performance thresholds (e.g., more than 85 percent of beneficiaries have had an annual eye and foot exam; 75 percent have LDL cholesterol levels below 100; less than 20 percent have hemoglobin Ale above 8~. An- other option is to provide chronic care manage- ment programs with annual bonuses (e.g., 2-5 percent of capitation payments) based on achieving certain performance goals. Each demonstration site should also ensure that payments to providers are properly risk-adjusted to reflect the more extensive care needs of the

~ Chronic Care frail elderly, the disabled, and those with multi- ple chronic conditions. Demonstration sites should consider provid- ing stronger incentives to patients to encourage self-management. To a great extent, patients play a critical role in the ongoing management of chronic conditions, which frequently require major lifestyle changes, including improved diet, exercise, and smoking cessation. Patient incentives might include variable cost sharing, such as discounted Medicare Part B premiums for those who follow care plans. Of course, all chronic care management programs should provide patients with the tools and medical and social support necessary to encourage healthy behaviors. Demonstration projects should engage in various foes of public reporting of progress and quality data. Each demonstration ~roiect should produce a progress report describing programmatic accomplishments. Each project should also be accountable to the public for showing improvements in the functioning and satisfaction of the chronically ill enrolled in the program, and over the long run, reductions in the state-wide (or community-wide) incidence and prevalence of chronic conditions. Demon- strations might also involve public reporting of comparative performance information on organ- ized chronic care management programs and providers. Although much of the focus of the chronic care demonstrations should be on redes- igning care delivery, the committee believes these efforts would be more effective if under- taken in an environment that provides ongoing feedback to clinicians and patients. provide special knowledge management assis- tance to demonstration sites in the form of syntheses of the evidence in selected areas, special chronic care Web sites for clinicians and patients, and a rapid response system for key clinical or treatment questions that might arise during the demonstration project. DHHS, in collaboration with private foun- dations, should ensure that each demonstration site has the resources necessary to establish a state-wide learning collaborative for clinicians involved in the care of patients with selected chronic conditions. In such collaboratives, participating members would commit to com- mon goals and related performance measures for improving chronic care. DHHS should also provide resources needed to sponsor public education efforts targeted at both consumers and clinicians, with an emphasis on primary preven- tion, early identification, and slowing of the rate of progression of chronic diseases. Special attention should be focused on cultivating Learning Collaboratives and Community-Wide Educational Efforts Each demonstration project should include efforts to assist clinicians and patients in gain- ing access to scientific knowledge, practice guidelines, certified protocols, identified best practices, and decision support tools. Some con- sideration should be given to whether the National Library of Medicine and the Agency for Heaithcare Research and Quality might 36 i~ patient- and clinician-led quality improvement efforts. The Robert Wood Johnson Foundation is providing support for a limited number of regional chronic care learning collaboratives, and there might be an opportunity to build on this synergistic effort already under way (Improving Chronic Illness Care, 2002~. POSSIBLE DEMONSTRATION EXPANSIONS Although the primary focus of these demon- strations is on Medicare beneficiaries, all demonstration projects should have a tentative plan from the beginning for expansion beyond Medicare to other public and private payers. The structures and programs developed by the demonstration projects are intended to benefit all people in the community both those with chronic conditions and those without who might delay or avoid the onset of such conditions through primary prevention. It is also important to note that many people with chronic contli- tions are covered by more than one insurance program (e.g., dual eligibilities under Medicare and Medicaid) or will move from one insurance

Chronic Care plan to another dunng the course of a project with changes in eligibility status (as regards age, income, and employment). The goal is to develop community-wide care delivery programs and supports that are available to all people, thus minimizing or avoiding some of the disruptions in care delivery and patient- clinician relationships that often result from . . c nanges In Insurance coverage. Some demonstrations might also expand beyond insured populations to provide coverage or services to certain uninsured individuals (e.g., uninsured cancer patients). Studies consis- tently document that sizable amounts of health care resources represent overuse (i.e., about 20 to 30 percent of patients receive services that expose them to more potential harm than good) (Schuster et al., 1998~. Medical errors, another type of quality problem, also consume health care resources resources used to treat those who are harmed as a result of those errors. One objective of some of the demonstration projects in this category may be to identify ways to remove "quality waste" (i.e., overuse and errors) from the system, and redistribute these resources to care of the uninsured (who frequently experience underuse, whereby patients do not receive services from which they would likely have benefited). DHHS and state governments should also consider providing grants or other financial incentives to encourage demonstration expansions aimed at the unin- sured. Although such expansion to all payers and/ or the uninsured would be difficult for most demonstration sites to accomplish within the 4-year demonstration time frame, it may be possible to identify some sites that have already taken steps in this direction and to build quite rapidly on these previous accomplishments. For example, an initiative in Maine Healthy Future Partnership for Quality is now in its 5th year (Healthy Futures and the Maine Center for Public Health, 2002~. This community-based health reform initiative serves six small towns in central Maine. Patients enrolled in the program include both insured and uninsured individuals, with services for the uninsured being covered by a I O percent surcharge on the fee for each insured participant. The surcharge is paid by the participating insurers, which include Anthem Blue Cross/Blue Shield, Cigna HealthCare, MaineCare (the state Medicaid program), and Hannaford Brothers. Thus far, the initiative has focused on patient education (regarding health behaviors, prevention, and disease management) and improved access to primary care and preventive services. REFERENCES American Association of Retired Persons. 2002. "Beyond 50.02: A Report to the Nation on Trends in Health Security." Online. Available at ht~p://www.aarp.org/beyondS0/ [accessed Sept. 9, 20023. Bailit Health Purchasing. 2002. Provider Incentive Models for Improving Quality of Care. Wash- ington, D.C.: National Health Care Purchasing Institute. Barton, M. B., and S. C. Schoenbaum. 1990. Improv- ing Influenza Vaccination Performance in an HMO Setting: the Use of Computer-Generated Reminders and Peer Comparison Feedback. Am J. Public Health 80 (5~:534-6. Brown, S. A. 1990. Studies of Educational Interven- tions and Outcomes in Diabetic Adults: a Meta- Analysis Revisited. Patient Educ Couns 16 (3~:189-215. Buchner, D. M., and E. H. Wagner. 1992. Preventing FrailHealth.ClinGeriatrMed 8~1~:1-17. Centers for Medicare and Medicaid Services. 2002. Medicare Program; Solicitation for Proposals for He Demonstration Project for Disease Manage- ment for Severely Chronically Ill Medicare Beneficiaries With Congestive Heart Failure, Diabetes, and Coronary Heart Disease. Fed Reg- ist 67 (36~:8267-70. Collins, K. S., D. L. Hughes, M. M. Doty, B. L. Ives, J. N. Edwards, and K. Tenney. 2002. Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. Findings From the Commonwealth Fund 2001 Health Care Quality Survey. New Yorl`, NY: The Commonwealth Fund. DeBusk, R. F., N. H. Miller, H. R. Superko, C. A. Dennis, R. J. Thomas, H. T. Lew, W. E. Berger

Chronic Care 3rd, R. S. Helter, J. Rompf, D. Gee, et al. 1994. A Case-Management System for Coronary Risk Factor Modification After Acute Myocardial Infarction. AnnInternMed 120~9~:721-9. Dickey, L. L., and D. Petitti. 1992. A Patient-Held Minirecord to Promote Adult Preventive Care. J Fam Pract 34 (4~:457-63. Georgia Cancer Coalition. 2002. "Georgia Cancer Coalition Homepage." Online. Available at http://www.gacancercoalition.com/ "accessed Sept. 12, 20023. Gluck, M. E. (Georgetown University) and K. W. Hanson (The Henry J. Kaiser Family Founda- tion). 2001. "Medicare Chart Book." Online. Avail ab le at http: llwww. kff. org/ content/2001/1622/ [accessed Sept. 9, 20024. Healthy Futures and the Maine Center for Public Health. 2002. Healthy Futures Partnership for Quality Project (Unpublished Document). IDEATel. 2002. "Informatics for Diabetes Education and Telemedicine." Online. Available at http:// www.ideatel.org/info.html [accessed July 30, 2002]. Improving Chronic Illness Care. 2002. "Improving Chronic Illness Care Homepage." Online. Avail- able at http://www.improvingchroniccare.org/ "accessed Oct.30, 20023. Katon, W., M. Von Korff, E. Lin, E. Walker, G. E. Simon, T. Bush, P. Robinson, and J. Russo. 1995. Collaborative Management to Achieve Treatment Guidelines. Impact on Depression in Primary Care. JAMA 273 (13~: 1026-31. Litzelman, D. K., R. S. Dittus, M. E. Miller, and W. M. Tierney. 1993. Requiring Physicians to Respond to Computerized Reminders Improves Their Compliance With Preventive Care Proto- cols. J Gen Intern Med 8 (6~:311-7. McCulloch, D. K., R. E. Glasgow, S. E. Hampson, and E. Wagner. 1994. A Systematic Approach to Diabetes Management in the Post-DCCT Era. Diabetes Care 17 (7~:765-9. McGinnis, M. J., PO Williams-Russo, and J. R. KnickmanO 2002. The Case for More Active Pol- icy Attention to lIealth Promotion. To Succeed, We Need Leadership That Informs and Motivates, Economic Incentives That Encourage Change, and Science That Moves the Frontiers. Health A~(Millwood) 21 (2~:78-93. Mullen, P. D., E. A. Laville, A. K. Biddle, and K. Lorig. 1987. Efficacy of Psychoeducational In- terventions on Pain, Depression, and Disability in People With Arthritis: a Meta-Analysis. JRheumatol 14 Suppl 15:33-9. National Academy on an Aging Society. 2000. "Workers and Chronic Conditions: Opportuni- ties to improve productivity." Online. Available at http://www.partnershipforsolutions.org/ pdf files/workers.pdf "accessed Oct. 30,20023. Partnership for Solutions. 2002a. "Multiple Chronic Conditions: Complications in Care and Treat- ment." Online. Available at bttp:llwww. partnershipforsolutions. org/pdf_files/2002/ multiplecoitions.pdf [accessed July 30, 2002a]. . 2002b. "Out-of-Pocket Spending: People with Chronic Conditions Spend Up to Five Times More for Health Care." Online. Available at http://www.partnershipforsolutions.org/ pdf_files/2002/outofpocket.pdf [accessed July 30, 2002b]. . 2002c. "Public Concerns: Caring for People with Chronic Conditions." Online. Available at http ://www.partnershipforsolutions. org/ pdf files/2002/publicconcn.pdf "accessed July 30, 2002c]. Schuster, M. A., E. A. McGlynn, and R. H. Brook. 1998. How Good Is the Quality of Health Care ~n ~e United States? Milbarzk Q 76 (4~:517-63, 509. Turner, R. C., L. E. Waivers, and K. O'Brien. 1990. The Effect of Patient-Carried Reminder Cards on the Performance of Health Maintenance Measures. Arch Intern Med 150 (3~:645-7. U.S. Deparknent of Health and Human Services. 2001. Medicare Fact Sheet: Providing Coordi- nated Care to Improve Quality of Care for Chronically Ill Medicare Beneficiaries. Wash- ington, D.C.: DHHS. Vinicor, F., S. J. Cohen, S. A. Mazzuca, N. Moorman, M. Wheeler, T. Kuebler, S. Swanson, P. Ours, S. E. Fineberg, E. E. Gordon, et al. 1987. DIABEDS: a Randomized Trial of the Effects of Physician and/or Patient Education on Diabetes Patient Outcomes. J Chronic Dis 40 (4~:345-56.

Chronic Care Von Korff, M., J. Gunman, J. Schaefer, S. J. Curry, and E. H. Wagner. 1997. Collaborative Manage- ment of Chronic Illness. Ann Intern Med 127 (12):1097-102. Wagner, E. H., B. T. Austin, and M. Von Korff. 1996. Organizing Care for Patients With Chronic Illness. Milbank Q 74 (4~:511-44. Welch, H. G., P. C. Albertsen, R. F. Nease, T. A. Bubolz, and J. H. Wasson. 1996. Estimating Treatment Benefits for the Elderly: the Effect of Competing Risks. Ann Intern Med 124 (6~:577- 84 . . 39

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In response to a request from the Secretary of the Department of Health and Human Services, the Institute of Medicine convened a committee to identify possible demonstration projects that might be implemented in 2003, with the hope of yielding models for broader health system reform within a few years. The committee is recommending a substantial portfolio of demonstration projects, including chronic care and primary care demonstrations, information and communications technology infrastructure demonstrations, health insurance coverage demonstrations, and liability demonstrations. As a set, the demonstrations address key aspects of the health care delivery system and the financing and legal environment in which health care is provided. The launching of a carefully crafted set of demonstrations is viewed as a way to initiate a "building block" approach to health system change.

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