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Performance Budget Submission for Congressional Justification

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Tracking the Nation's Progress

A critical role for Government is conducting research and evaluations to assess how well the market is meeting critical health care objectives. That role has never been more important. Public programs are being reorganized, downsized, and privatized. Recent Federal legislation has made some of the most significant changes in Federal health policy in nearly two decades—revisions in Medicare and Medicaid policy, the Medical Savings Accounts demonstrations, and the State Child Health Insurance Program—which require evaluation. An even more dramatic revolution is continuing in the private sector with the phenomenal growth of managed care, increasing vertical and horizontal integration, and new alliances and relationships among insurers, providers, and purchasers in an increasingly competitive marketplace.

The recent public debate regarding the impact of managed care on the quality of health care services has highlighted the need for putting in place the capacity to assess and track at the national and state and levels the impact of these changes. National spending on health care continues to be an issue, as indications emerge that costs may increase rapidly once again. There are many questions about current spending: are we spending too much or too little; is the spending efficient in purchasing value for money; is the spending equitable; and how does it affect access and quality?

To address these questions, it is important to collect and examine nationally representative data on:

  • The types of health care services Americans use.
  • How frequently they use them.
  • How much is paid for the services used.
  • Who pays what portion of those payments.

It is also important to have information on the types and costs of private health insurance available to, and held by, the U.S. population.

Providing objective, science-based, timely information to health care decisionmakers—patient and clinicians, health system leaders, and policymakers—is the challenge that faces health care research and AHCPR in the next century. Meeting this challenge depends heavily on the continued collaboration and communication between the Agency and its partners.

Medical Expenditure Panel Survey (MEPS)

The Medical Expenditure Panel Survey (MEPS) is a nationally representative survey of health care use, expenditures, sources of payment, and insurance coverage for the U.S. civilian noninstitutionalized population, as well as a national survey of nursing homes and their residents. This survey is AHCPR's main source to collect and examine comprehensive data that estimate the level and distribution of health care use and expenditures, monitor the dynamics of the health care delivery and insurance systems, and assess health care policy implications. Select for additional details regarding MEPS.

Building on the HIV Cost and Service Utilization Study (HCSUS)

Swift changes in treatment regimens resulting from continuous therapeutic advances are having an important effect of health care resource utilization by persons with HIV disease. The rapidity of change means that data collected as recently as three years ago do not reflect the current situation and cannot be used reliably for policy and planning purposes. There is a need for an ongoing mechanism to obtain up-to-date information regarding utilization in HIV disease.

HCSUS. In 1994, AHCPR signed a 4-year cooperative agreement with the RAND Corporation to conduct a study of the provision of care to persons with HIV disease. This study, referred to as the HIV Cost and Service Utilization Study (HCSUS), selected a cohort of persons with HIV disease using a three-stage national probability sample design. The first stage involved the random selection of metropolitan areas and clusters of rural counties. The second stage involved the random selection of care providers in these metropolitan and rural areas. The third stage involved the random selection of patients seen by the providers selected in the second stage.

This design resulted in the selection of 4,042 persons with HIV disease from 145 providers in 28 metropolitan areas and 51 providers in 25 rural areas. Baseline interviews began January 1996 and lasted for 15 months. These interviews asked questions about care provided during the preceding 6 month period. Attempts also were made to obtain medical and financial records from the care providers, and information about drug prescriptions from pharmacies. The 4-year study released its findings in December of 1998. The study found that:

  • A significant proportion of HIV-infected adults do not receive medical care on a regular basis. Roughly 335,000 adults in the United States infected by HIV, the virus that causes AIDS, see a doctor on a regular basis. However, the Centers for Disease Control and Prevention (CDC) estimates that 650,000 to 900,000 Americans have the virus.
  • Most infected adults who do not receive medical care on a regular basis are in the early stages of the disease.
  • HIV care amounted to $6.7 billion in 1996, or an average of $20,000 per HIV patient. This level is less than what is commonly believed and represents less than 1 percent of all direct personal health expenditures in the United States.
  • Eighty-five percent of patients treated for the virus used at least one HIV medication, and 79 percent used an antiretroviral drug during the 6 months prior to being interviewed. The pattern of use of protease inhibitors and non-nucleoside reverse transcriptase inhibitors—recently developed drugs that are highly effective in suppressing HIV infection—changed rapidly in 1996. At the beginning of the year, 16 percent of patients had used one of the newer drugs. By December of 1996, that proportion had shot up to 55 percent.
  • Fifty-nine percent of adults under care because of the virus meet the CDC definition of AIDS—the most advanced stage of HIV disease. They represent about 85 percent of all adults thought to be living with "full-blown" AIDS.
  • Americans under care for HIV are disproportionately male, black, unemployed, poor and do not have private health insurance to pay for medical care.
  • Thirty percent of patients received care at major teaching hospitals; the balance received their care from office-based physicians and community hospitals and clinics. One-third made at least 1 visit to an emergency room and 20 percent were hospitalized every 6 months. Their stays accounted for about one percent of all hospital days in the United States.
  • Hospital care accounted for 43 percent of patients' direct medical care costs, pharmaceuticals for 39 percent, emergency department care for 2 percent, and other outpatient care and associated costs for 15 percent.
  • Seventy-seven percent of HIV-infected patients were men and 89 percent were less than 50 years old. About half were non-Hispanic whites, one-third were non-Hispanic blacks and one-sixth were Hispanics.
  • Women with HIV were more likely than men to be young, black, less educated, unemployed, impoverished and under-insured. But they were also less likely to have "full-blown" AIDS.
  • The percentage of HIV patients who depend exclusively on Medicaid (29 percent) is three times greater than the percentage of Medicaid patients in the general population. A surprisingly large 19 percent of the population had coverage through Medicare.

One of the lessons of HCSUS is that care providers must be an integral part of any study to examine the cost, access, and utilization of services by persons with HIV disease. At the time HCSUS was being funded it was not feasible to obtain information about all of the care received by a person with HIV disease from a single care provider because persons with HIV infection often obtained care from several providers at a given time. However, since the early 1990s care of persons with HIV disease has become much more complicated (in 1990, there was only one anti-viral drug available to treat HIV disease), and most persons with HIV disease now obtain care from a provider who specializes in the care of persons with HIV disease. Moreover, the rapid diffusion of managed care among state Medicaid programs has precipitated the growth of care groups that are capable of treating persons with HIV disease throughout a given state. Thus, today it is feasible to collect information about a large number of persons with HIV disease from providers who specialize in HIV care.

Building data infrastructure—HIV Data Coordinating Center. In 1998, AHCPR and sister agencies provided support to develop the HIV Resource Utilization Data Coordinating Center (DCC), which will pilot test data transmission from a small number of providers.

Rapidly occurring therapeutic advances, a changing epidemiology of HIV infection, and the increasing shift to managed care for HIV-infected individuals all are having a major effect on patterns of health care resource utilization for HIV diseases. The rapidity of change in HIV service delivery means that data collected as recently as 3 to 4 years ago do not reflect the current situation and cannot be used reliably for policy and planning purposes. There is a need for an ongoing mechanism to obtain up-to-date information regarding resource utilization in HIV disease.

Care providers will be asked to provide administrative (e.g., age, sex, race, insurer status), medical (CD4+ T-cell counts, viral loads, and opportunistic infections), and financial (number of visits and number of hospitalizations) information about their patients.

The primary advantage of this approach is that, once it is fully operational, it will obtain reasonably complete medical and financial information from more than 10 times the number of HCSUS participants at less than one-half the cost. Indeed, information from 30,000 HIV-infected patients may be used to study differences in care between many different categories of patients that would not be possible using a sample one-tenth the size. For example, it may be HIV-infected persons in the early stages of HIV disease who have not experienced an opportunistic infection and who are black are less likely to obtain multiple drug regimens that include a protease inhibitor. Using a sample of 30,000 patients with HIV disease will permit an examination of this hypothesis, and it will permit an analysis of the importance of factors such as insurance status, geographic location, gender, and mode of transmission on the likelihood that black persons in the early stages of HIV disease receive expensive multi-drug therapies.

Healthcare Cost and Utilization Project (HCUP)

The Healthcare Cost and Utilization Project includes two databases for health care research: the Nationwide Inpatient Sample (NIS) and the State Inpatient Database (SID). The NIS includes inpatient data from a national sample of about 900 hospitals. The SID covers inpatient care in community hospitals in 19 States that represent more than half of all U.S. hospital discharges. These databases include 8 years of data, from 1988 to 1995. The 1996 data will be released in early 1999.

HCUP's objectives are to: (1) obtain data from statewide information sources, (2) design and develop a multi-State health care database for health care research and health policy analysis, and (3) make these data available to a broad set of public and private users.

The uniform data in HCUP make possible comparative studies of health care services and the use and cost of hospital care, including the effects of market forces on hospitals and the care they provide, variations in medical practice, the effectiveness of medical technology and treatments, and use of services by special populations, including racial minorities, women, children, and persons with rare medical conditions.

Research Example Using HCUP Data. During the 1997 legislative sessions, more than 130 bills related minimum lengths of stay for mastectomy were introduced in 36 states. The support for legislation had primarily been based upon individual testimonials of women, or upon small studies looking at subsets of women with a specific level of breast disease or limited to a single payer. No cross-state studies examining all breast procedures in an all-payer population had been done. The goal of this project was to describe and analyze the use of ambulatory mastectomy in the context of other breast-conserving surgical interventions (lumpectomy and sub-total mastectomy) for the treatment of breast cancer in the ambulatory and inpatient health care setting.

Using HCUP data from five States (Colorado, Connecticut, Maryland, New Jersey, and New York), researchers found the following:

  • Virtually no mastectomies were performed in hospitals that are in rural areas.
  • Following the release of a an NIH Consensus Conference recommendation in 1991 that breast-conserving surgical treatments be used in lieu of mastectomy for early stage breast cancer, the rate of mastectomy has been steadily declining across all five States.
  • Length of stay has been steadily decreasing for all procedures since the implementation of Diagnosis-Related Groups (DRGs). It is clear that across all five States studied, length of stay for inpatient mastectomy has also been steadily decreasing. In 1990, 5 to 30 percent of women receiving a mastectomy had a 1- or 2-day inpatient length of stay. By 1995, the percent of women with a 1- or 2-day length of stay following a mastectomy had increased to between 30 and 70 percent.
  • The percent of mastectomy in the ambulatory setting is increasing slightly across three of the five States, but remains low in all of the States except Colorado through 1995.
  • Lumpectomy has been, and continues to be, primarily an ambulatory procedure.

Clinical Classifications for Health Policy Research (CCHPR). In addition, the HCUP databases have been a powerful resource for the development of tools that can be applied to other similar databases by health services researchers and decisionmakers. For example, the Clinical Classifications for Health Policy Research (CCHPR) were developed with HCUP data and are available from AHCPR. The CCHPR provides a method for classifying diagnoses or procedures into clinically meaningful categories, which can be used for aggregate statistical reporting of a variety of types.

Diagnoses and procedures for hospital stays are coded using the International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM), a uniform and standardized coding system. ICD-9-CM consists of over 12,000 diagnosis codes and 3,500 procedure codes. Although it is possible to present descriptive statistics for individual ICD-9-CM codes, it is often helpful to aggregate codes into clinically meaningful categories that comprise similar conditions or procedures. The CCHPR software program aggregates ICD-9-CM codes, about 12,000 diagnosis codes and 3,500 procedure codes in total, into a smaller number of clinically meaningful, relatively homogenous clusters.

Types of questions that CCHPR may be used to address include the following:

  • How do the costs of various options for treating a disease, such as benign uterine disease, compare? For example, how does the cost of vaginal hysterectomy compare with the cost of abdominal hysterectomy?
  • Does the treatment option vary by patient age, race or insurance status?
  • Is a given technology, such as laparoscopic cholecystectomy, being used to the same extent across regions of the country?

CCHPR users include insurers and managed care organizations that want to examine claims experience in a clinically meaningful way, State data organizations or hospitals that want to develop clinically based utilization profiles, and pharmaceutical and device manufacturers that want to assess unmet clinical needs.

Select to access more online information about HCUP.

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Activities in Support of All Goals

Health Services Research Training

As the Nation's health care delivery systems continue to change and restructure, the need for individuals trained to conduct research and perform analyses to assist decisionmakers in both health policy and health care delivery settings is crucial.

AHCPR supports predoctoral and postdoctoral training through the National Research Service Award (NRSA) program. AHCPR awards NRSA training grants to institutions for predoctoral and postdoctoral training (the AHCPR Institutional Training Awards) and individual NRSA fellowships to applicants who have completed their doctoral degrees (the AHCPR Fellowship Awards). AHCPR also supports dissertation grants for doctoral candidates and is interested in fostering opportunities for minority students in all training.

Initiated in 1998, and continuing into fiscal year 1999, AHCPR's Institutional Training Innovation Awards are directed toward supporting the design and implementation of new models of health services research training in order to address emerging issues in health care policy and delivery, and to respond to the changing analytic needs of health care providers, payers, and policymakers. These 10 grants represent seed money for developmental efforts. They are aimed at novel and unique educational approaches geared to enhancing established health services research training programs. Activities supported include: curriculum or faculty development; developing partnerships with nonacademic organizations and community health providers; facilitating the recruitment and retention of minority trainees; and providing new types of short term training opportunities.

Dissemination Activities

AHCPR promotes widespread distribution and assimilation of its information and research products through a variety of dissemination methods including: publication in professional journals; provider and consumer materials, press conferences; interviews and story placement with medical/trade press; and articles in the popular press.

In addition, as part of the Agency's added emphasis on translating research into practice, a pilot program is being established to provide additional support to funded researchers to foster the use of their findings. Researchers will be asked to identify which of their findings represent particularly noteworthy advances that are likely to change practice and improve care, design innovative methods and strategies to disseminate, translate, and implement these findings, and measure their impact.

Product Development and Distribution.

  • AHCPR released Your Guide to Choosing Quality Health Care, an interactive quality navigational tool to help people to use evidence-based information on quality and to take a more active role in their health care decisions. The Guide, available on AHCPR's Web site and in print, was developed from research about what people want and need to know when making some of the most important health care decisions they will ever face —decisions about health plans, doctors, treatments, hospitals, and long-term care. It was officially released as part of the Department of Labor's new employee health benefits education campaign.
  • AHCPR's Smoking Cessation Guideline led to a multimillion dollar public/private initiative, called the Addressing Tobacco in Managed Care Initiative, which will increase managed care's implementation of smoking cessation programs through the development of conferences, training, and information dissemination. Partners in this initiative are the Robert Wood Johnson Foundation, AHCPR, CDC, NIH, and AAHP. (Select to access online versions.)
  • AHCPR released Children's Health 1996, a chartbook of data derived from the Medical Expenditure Panel Survey. Its wide distribution included the White House; all U.S. Senators and Representatives; all Governors; all American Academy of Pediatrics State chapters; all regional health administrators of the Department of Health and Human Services (HHS); all State and territory Medicaid directors; all State health and State medical societies; the Administration for Children and Families; and African-American and Hispanic health and consumer organizations. In addition it was sent to the Office of Management and Budget (OMB), the Congressional Budget Office (CBO); the Congressional Research Service (CRS); the General Accounting Office (GAO), the Children's Defense Fund, Kids Campaign, various children's hospitals, local health departments, health plans, and research firms across the country.

AHCPR's Web Site. Use of AHCPR's Web site continued to increase in fiscal year 1998, with more than 10 million hits for the year, compared to 2.9 million the previous year, and over 452,000 user sessions. More than 2,500 inquiries were handled through the Web site mailbox, up from 1,300 the previous year. Uploaded documents to the site also increased, 1,450 compared to the previous years' count at 950.

The site was redesigned at the beginning of the fiscal year to address feedback from a customer satisfaction survey of the Web site, and a Spanish button was added to the site to provide an index to the electronic versions of translated consumer materials available from the Agency.

In addition, electronic access to the Agency's publications on the full-text retrieval system HSTAT, maintained by the National Library of Medicine, reached a new high (over 600,000) for September, 1998, with an overall monthly average of more than 400,000 accesses during fiscal year 1998.

User Liaison Program (ULP). In fiscal year 1998 and 1999, AHCPR's User Liaison Program (ULP) will continue its national workshop program for senior State and local health officials. These workshops address topics identified for ULP by State and local officials as their current health policy concerns/priorities and are designed to help inform their decisionmaking.

In fiscal year 1998, the ULP conducted a total of 13 workshops for State officials focusing on topics such as:

  • "Strengthening the Rural Health Infrastructure: Network Development and Managed Care Strategies."
  • "Managed Care and Persons with Disabilities and Chronic Illnesses."
  • "State Children's Health Insurance Program (SCHIP): Implementing Effective Programs and Understanding their Impacts."

The demand from the States for the June 1998 SCHIP workshop was so overwhelming that ULP altered its national schedule to repeat the SCHIP workshop in September 1998. Of the 13 fiscal year 1998 ULP workshops, 3 were held after State officials asked ULP to help them design, conduct and cosponsor workshops highlighting recent health care research findings and current "best practices" on health policy topics selected specifically for their States:

  • The Texas Department of Health: a workshop for its Statewide Health Coordinating Council on the "Texas Health Care Workforce: Principles for Planning and Policy Development" (held March 1998).
  • The New Jersey Department of Health and Senior Services: a workshop for health care administrators and policymakers involved with the New Jersey Charity Care Managed Care Program entitled, "Developing Managed Care Systems for Indigent Populations" (held September 1998).
  • The Iowa Long Term Care Coordinating Unit: a workshop on "New Directions in Long Term Care" for senior state officials and long term care providers (held September 1998).

In addition, one workshop was co-sponsored with Region I officials focusing on "Collaboration Between Public Health and Managed Care: An Initiative of the New England Regional Office." Senior State health officials and executives from managed care organizations in the States of Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island, and Vermont participated in the workshop.

In fiscal year 1999, the User Liaison Program will conduct 13 workshops and at least 3 seminars, including a February 1999 workshop on "Aging in Rural Areas: Preparing for the Future" designed specifically for State Directors of Rural Health Offices and Aging Offices in Regions V and VII (Iowa, Illinois, Indiana, Kansas, Michigan, Minnesota, Missouri, Nebraska, Ohio, Wisconsin). The ULP will be premiering several new workshops in fiscal year 1999, including:

  • "Providing Care to Diverse Populations: Strategies for Promoting Cultural Competency" (June 1999).
  • "Promoting Cost Effective Care: Using Outcomes Research, Disease Management, and Technology Assessment" (July 1999).
  • "Public Health and Managed Care: Working Together to Ensure Health Care Quality" (September 1999).

The latter workshop will be tailored after the fiscal year 1998 Region I workshop with a similar focus.

Funding Summary

Authorizing Legislation—Section 30l and Title IX of the Public Health Service Act

Budget Authority/ FTEs Fiscal Year 1998 Appropriation Fiscal Year 1999 Enacted Fiscal Year 2000 Request Increase or Decrease
226 234 244 +10

Prior Year Funding

Funding and FTE levels for the Research on Health Costs, Quality and Outcomes program over the 5-year period prior to fiscal year 1998 have been as follows:

Year Amount FTEs
1996 $107,939,000 222
1997 $102,863,000 216
1998 Approp. $107,980,000 226
1999 Presidential. Budget $140,914,000 234
2000 Request $167,914,000 244

Sources of Research on Health Cost, Quality and Outcomes funding follow:

Year Budget Authority Trust Funds 1% Evaluation Total
1996 62,815,000 --- 45,124,000 $107,939,000
1997 94,113,000 --- 8,750,000 $102,863,000
1998 Appropriation 88,074,000 --- 19,906,000 $107,980,000
1999 P.B. 98,067,000 --- 42,847,000 $140,914,000
2000 Request 24,326,000 --- 143,588,000 $167,914,000

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