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Performance Budget Submission for Congressional Justification

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Rationale for the Fiscal Year 2000 Request

The fiscal year 2000 request will support 176 new grants and 323 total grants. The request fully funds commitments and provides for extramural research, both basic and applied; development of tools to monitor and improve quality of care; dissemination, and other activities in these areas:

The increase also provides support for the following initiatives: Race and Health Disparity, Long-term Care, Chronic Disease Prevention, and Violence Against Women.

Priority I: New Research on Priority Health Issues ($10.055 Million)

Introduction

This fiscal year 2000 priority will fund health care research to close the gap between what we know now and what we need to know to improve care in the future. It is driven by the Agency's Strategic Plan and invests in research to:

  1. Support Improvements in Health Outcomes.
  2. Strengthen Quality Measurement and Improvement.
  3. Identify Strategies To Improve Access, Foster Appropriate Use, and Reduce Unnecessary Expenditures.

The key features of this priority include: (1) explicit identification of conditions, populations, and problems that reflect national priorities, (2) a commitment of sufficient funds to each area to yield substantial advancements in 3 to 5 years, (3) a coordinated strategy to link researchers with the future or intended users of the findings from the outset, and (4) close linkage between researchers and important implementation opportunities in the health care system to maximize rapid adoption, based on our successful experience with the CAHPS®. This last step will assist in the translation of research into practice.

Action Plan

Priority I—Summary, New Research on Priority Health Issues

Item Cost, millions
Outcomes and health services research on vulnerable populations $3.500
Violence Against Women 1.000
Cross-cutting research in clinical preventive services 1.000
Pharmaceuticals research 2.000
Evaluating the impact of managed care and other market changes 2.205
Research management (3 Full-time equivalents) 0.350
Total $10.055

In each of the above steps for Priority I, research will be funded that builds on the investments to date and addresses the Agency's goals: outcomes; quality; and cost, use and access.

Identification of the conditions, populations, and problems that reflect national priorities will be driven by the following criteria:

  • Helping Medicare and Medicaid improve the quality and value of care for their beneficiaries and helping other Federal and State policymakers assure that the private market operates in the best interests of the consumers. Examples of important conditions, in terms of costs, to Medicare and Medicaid are displayed in Table 1 and Table 2.
  • Reviewing the current quality of care provided, the costs of care, the extent of variation, the disease burden on life and quality of life, and its impact on vulnerable populations.
  • Determining the extent to which they represent areas with significant disparities in health and care for minority populations exist and are consistent with the goals of the Department's Race and Health Initiative and Healthy People 2010.
  • Assessing the ability to complement the research being carried out by the National Insitutes of Health (NIH), Health Resources and Services Administration (HRSA), and the Centers for Disease Control and Prevention (CDC) to ensure a balanced investment in the full continuum of research, including biomedical, behavioral, prevention, and health care research.
  • Encompassing a specific initiative on diabetes mellitus to complement the improvement activities of the Health Care Financing Administration.

Table 1. Number of Medicaid Visits, Ambulatory Data, Ages 0-18 Only

Diagnostic Cluster Total Visits,
in millions
1. Acute upper respiratory tract infection 14.8
2. General medical examination 14.7
3. Otitis media 9.5
4. Acute lower respiratory tract infection 4.4
5. Asthma 2.9
6. Diarrhea 2.4
7. Dermatitis and eczema 2.3
8. Conjunctivitis, keratitis 1.9
9. Sinusitis 1.9
10. Chronic rhinitis 1.8

Table 2. Charges Paid by Medicare, Hospital Data

Diagnostic Cluster Total Charges,
in billions
1. Coronary atherosclerosis $12.1
2. Acute myocardial infarction 6.9
3. Complication of device, implant 5.0
4. Pneumonia 4.8
5. Osteoarthritis 4.8
5. Fracture of neck of femur (hip) 4.3
6. Congestive heart failure, nonhypertension 4.3
7. Acute cerebrovascular disease 3.6
9. Septicemia 2.7
10. Respiratory failure 2.6

Specific areas of research for Priority I will be:

  • Improving health outcomes and health care research on vulnerable populations ($3.500 million). In its 10-year history, AHCPR has funded numerous important studies identifying variations in the quality and outcomes of care received by various special groups in the American population. Notable among these are studies of racial/ethnic minorities which have helped to identify and describe disparities in care and begin to explain the reasons for them. While socioeconomics, lifestyle, and behavior may be contributing factors, it is clear from our research that health system barriers and other access issues persist—even within systems serving patients from comparable socioeconomic groups. Two-thirds of Americans will die from chronic, disabling conditions, yet current research does not begin to provide solutions to this challenge. A growing proportion of these Americans will be from racial/ethnic minorities. Children represent another vulnerable group where the evidence base for the effectiveness of many common interventions is weak or entirely lacking. Finally, AHCPR research on women and the services they receive has also highlighted the differences in care patterns, raising questions about whether these are appropriate or reflect poor quality for women.

    In this initiative AHCPR will use a Centers of Excellence strategy to fund broadly-based program projects to address key research questions for these vulnerable populations and emphasize studies that identify effective strategies to overcome disparities in the outcomes, quality, and access to care.

  • Improving health outcomes for minorities. This research will identify the clinical, cultural, and organizational factors that contribute to disparities, and it will test clinical and organizational strategies to improve the quality, outcomes, and access to care for racial/ethnic minority populations. This work will be carried out in the six priority areas identified in the Department's Race and Health Disparities Initiative:
    1. Infant mortality.
    2. Cancer screening and management.
    3. Cardiovascular disease.
    4. Diabetes mellitus.
    5. HIV/AIDS.
    6. Immunization and vaccines.
  • Improving outcomes for the chronically ill and elderly. This research will examine how various clinical and system characteristics affect the health outcomes, quality, access, and satisfaction for the elderly and chronically ill. This will include a specific focus on the health outcomes and needs of vulnerable elderly Medicare beneficiaries; racial and ethnic minorities, who represent a large and growing proportion of this population; women; and those with functional impairments.
  • Outcomes and effectiveness of health care for children. This research will focus on effectiveness and/or cost-effectiveness studies of diagnostic, prevention, treatment, rehabilitative, or palliative interventions for children and adolescents with severe chronic illnesses and disabilities.
  • Women's health research. This research will focus on the impact of new models of care on quality, cost, and effectiveness. Whenever possible, this research will be coordinated with projects funded through the Office of Women's Health.
  • Assessing the outcomes, effectiveness and cost-effectiveness of clinical treatment programs for domestic violence against women ($1.000 million). Despite the growing investments of public and private organizations in domestic violence treatment programs, there are few well-designed studies of whether such programs work to improve the health of victims of violence. Virtually no longitudinal studies of the outcomes and effectiveness of interventions exist. This is a critical gap because domestic violence tends to be a recurrent problem and the success of programs may only be evident over time; or conversely, programs which bring about initial improvements may not result in sustained progress.

    In this initiative, the Agency would work with health plans, clinicians, and researchers to support up to three large-scale, longitudinal studies of the outcomes and effectiveness of medical interventions designed to identify and treat domestic violence victims. Collaborating health plans would be required to share the costs of the project and provide administrative support for data development and collection.

  • Cross-cutting research in Clinical Preventive Services (CPS) ($1.000 million). AHCPR will build on its fiscal year 1999 investment in the United States Preventive Services Task Force (USPSTF) and the Put Prevention into Practice (PPIP) Initiative, recently launched by AHCPR and the Surgeon General, and use the grant mechanism to fund research on clinical preventive services. This research will fill the gaps in knowledge on the effectiveness and cost-effectiveness of CPS identified by the USPSTF, further the goals identified by the President's Commission on Consumer Protection and Quality in the Health Care Industry with respect to CPS, inform implementation activities carried out under PPIP, and complement the population and community-based prevention research at the CDC.
  • Pharmaceuticals research ($2.000 million). AHCPR will build on its successful pharmaceutical outcomes projects to fund research that is responsive to the current needs of health plans, providers, and consumers. These are well articulated by the recent amendment to the Agency's proposed reauthorization. These studies will emphasize the reduction of adverse drug events, the quality of prescribing practices, and comparative studies of effectiveness and cost-effectiveness.
  • Evaluating the impact of managed care and other market changes ($2.205 million). AHCPR supports a body of new research on managed care and other market dynamics to enhance our understanding of how ongoing changes in the organization, financing and delivery of health care affect access, cost, use, quality and outcomes, with a primary focus on market or community-level impacts. In fiscal year 2000, AHCPR will solicit and support research on:
    • Role of employers and other purchasers in incorporating quality considerations into their health coverage buying decisions (value-based purchasing).
    • Managed care penetration, and the impact on market dynamics and patient care.
    • Consolidation among physicians as well as mergers among health plans and hospitals, and legislative and regulatory actions in response to these trends.
    • Proliferation of new organizational types, many based on purely contractual agreements (virtual organizations), and the impact on market dynamics and patient care.
    • Factors contributing to the current resurgence in health care costs.

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Priority II—New Tools and Talent for a New Century ($13.200 Million)

Introduction

The advent of a new century occurs at a time of dramatic changes in our health care system, changes which vary across and within States. Paralleling these changes are shifts in the focus of health care decisionmaking—from individual providers to health plan managers, and from the Federal government to States and community agencies. Every day, Federal and State policymakers, medical directors of managed care organizations, and large employers are making major decisions that affect the quality, cost and accessibility of care. Unfortunately, the data and knowledge they need to inform these decisions are generally unavailable, inadequate, and out-of-date. Past research on what works in health care largely has focused on the individual clinician-patient encounter, but these encounters now occur within a new health care system about which we know very little.

As a result, we are not able to provide public and private policymakers with the answer to even the most basic health care question: How are we doing? There is no set of leading indicators comparable to those that exist, for example, in the transportation and manufacturing industries. Decisionmakers lack the fundamental information and tools they need to monitor, much less influence, patient care. They tell us they are flying blind, trying out new delivery or financing arrangements based on word-of-mouth or publicized anecdotes, with little knowledge of likely impacts on patient care, especially on quality, access, and cost. In focus groups and expert meetings over the past several years, decisionmakers have told us that they experience a major gap between what they need to know and what the research community can offer them.

The report of the President's Commission highlighted a gap in the area of quality by calling for the identification of a core set of quality measures for reporting by the health care industry. Implementation of this recommendation will require concerted action on the part of government and the private sector and will be led by the Forum for Health Care Quality to be established by the Vice-President this summer. However, within this context, the Department has a responsibility to begin to develop the capacity to monitor the quality of care nationally. AHCPR will take the leadership role for this within the Department by investing in the tools that we will need to advance quality measurement.

Action Plan

Priority II. Summary, New Tools and Talent for a New Century

Item Cost, millions
Develop databases and research tools for decisionmaking
($7.000 million in MEPS budget activity)
$8.500
Build the toolbox to improve the health care system 2.850
Nurture next generation of health services researchers 1.500
Research management (3 full-time equivalents) 0.350
Total $13.200

For fiscal year 2000, in partnerships and collaborations with these decisionmakers, AHCPR will invest in three areas to close this gap in information on quality, cost, and access.

Step 1: AHCPR will develop databases and research tools for decisionmaking ($8.500 million). AHCPR will develop a system of early warning indicators to measure and track changes in quality, access and cost. We will enhance two already powerful databases and create new tools so these databases can be mined by Federal, State and community policymakers and leaders in the private sector to measure and evaluate major system changes at the national, State, and local market levels.

  • Monitor quality of care by strengthening national tracking capacity of MEPS ($7.000 million—to be funded using the MEPS budget activity). AHCPR will make significant progress toward increasing the analytic capabilities of the Medical Expenditure Panel Survey (MEPS) by developing the capacity to monitor the quality of health care Americans receive. MEPS already provides extensive, longitudinal data—not elsewhere available—on the types of health care services Americans use, how much their health care costs, and who pays for the services. What MEPS cannot give us now, however, is detailed information about how health care system changes are influencing the quality of care nationally. In 2000, we will:
    • Include in the MEPS household sample a sufficient sample of individuals with certain illnesses of national interest in terms of quality of care and burden of disease. This enhancement will permit more focused analyses of the quality of care received for these vulnerable populations.
    • Expand the clinical detail in the household and medical provider surveys. AHCPR will enhance the Medical Provider Component of MEPS by increasing the collection of clinical detail on the content of care to determine the quality of care provided to individuals. MEPS will also collect, as part of the Household Component, more information on use of clinical preventive services.
    • Add new questions, including a more extensive module on children, to enable us to understand the impact of changes in health and human service programs.
    With these enhancements, we will for the first time be able to begin to develop the capacity to:
    • Report on the quality of care Americans receive at the national and regional level, in terms of clinical quality, patient satisfaction, access and health status, both in managed care and fee-for-service settings.
    • Examine quality, cost, access, and use for clinical preventive services. Enhanced data collection, in conjunction with the existing MEPS capacity to examine differences in minorities and ethnic groups, will provide critical data for closing the gaps in medical care as outlined in the President's Race and Health Disparities Initiative.
    • Track the national impact of new Federal and State programs, including Title XXI (the new State Child Health Insurance Program), on access and cost of care for children, and compare and evaluate the effectiveness of different strategies to reduce the number of uninsured children and increase access to needed services by those who are covered.
  • Redesign and enrich HCUP, enhancing its power to inform State and community policymakers ($1.500 million). We will redesign and expand the Healthcare Cost and Utilization Project (HCUP) to provide State and community decisionmakers a powerful set of linked databases they can use to monitor the impact of major system changes on access, quality, outcomes and cost in their States and communities, and to compare these against the progress of other States and communities. We also will develop tools policymakers can use to convert these data more quickly into information they need for decisionmaking.

    HCUP currently is a powerful, all-payer, longitudinal database, that provides a comprehensive source of hospital inpatient financial, clinical, and patient demographic information, developed and maintained in partnership with 19 State governments and State hospital associations (22 by the end of fiscal year 1999). As health care moves from inpatient to outpatient settings, the Agency has broadened the database, extending its reach to include all ambulatory surgery encounters in nine of the participating States.

    HCUP serves as a complement to MEPS in understanding the quality of care in America (select to access HCUP Overview). HCUP is a critical database component that the Agency maintains to understand the quality, cost, and use of health care in the United States. It is unique in several respects. Because it is based on complete administrative data rather than a sample survey such as MEPS, HCUP can describe current patterns of care for uncommon as well as common diseases. In many instances, HCUP data can be used at the local and State level, as well as at the national level. HCUP can provide insight about the effects of patient, provider and payer characteristics on access patterns, quality and outcomes of care and in particular permits analysis of care provided to special populations (including minorities) and the care provided to uninsured persons. Policymakers and decisionmakers can use the HCUP inpatient and ambulatory databases to better understand the patterns of care in their own communities, and to benchmark against other similar communities within their State, or in other States.

    In fiscal year 2000, AHCPR will:

    • Add clinical and financial records from emergency departments and other ambulatory care settings taking HCUP one step closer to being all-provider as well as all-payer. To enable this enhancement, we will use the latest informatics expertise on how to link these data quickly, efficiently, and securely, building on our past expertise and experiences in linking data and protecting confidentiality.
    • Expand the database to 4 other States, for a total of 26 States.
    • In partnership with States and providers, undertake one or two demonstrations linking existing data with Medicaid managed care data and other State-level databases.
    • Link HCUP to one or two additional public and private databases to create a virtual database integrating an array of supply and demand side variables at the level of communities and market areas.
    • Increase technical assistance to State policymakers, through the Agency's User Liaison Program, on how to use and apply the data for monitoring and evaluation purposes.
    • Work with health care provider associations and other Statewide data organizations to establish benchmark data and other tools they can use to track and compare their progress.
    • Fund a demonstration on the use of HCUP data and products derived from HCUP, including Quality Indicators.
    With these fiscal year 2000 priorities, Federal and State policymakers and other users will be able to:
    • Track hospital costs for care provided to uninsured people.
    • Examine impact of managed care policies on consumers' access to emergency care services.
    • Track national impact of the SCHIP on children's use of emergency department services.
    • Track Medicaid beneficiaries' use of primary care services and the extent to which the greater availability of primary care can, as has been hypothesized, lead to a decline in the number of hospitalizations for conditions such as asthma and diabetes.
    • Compare trends in the movement of surgeries such as mastectomies from inpatient to outpatient sites, and in particular the impact of managed care on these trends.
    • Systematically compare and analyze supply and demand variables, and study how the behavior of health plans, hospitals and other participants in health care markets and communities affects consumer prices, access, quality, and ultimately health status.
    • Increase by 30 percent the number of States with the capacity to use HCUP data and benchmarking tools to track changes in access, quality and cost, and to compare their performance with that of other States.
    • Enable State policymakers and hospital associations to have quick access to key information drawn from the HCUP database.

Step 2: Build the toolbox to improve the health care system ($2.850 million). AHCPR has consistently invested in the development of tools that make the results of research available to users. A number of these tools are currently in use by HCFA Quality Improvement Organizations (QIOs) across the country. Changes in the health care system, innovations in information technology, and the presence of the Internet open up new opportunities and challenges for the collection, application, and protection of health related information.

Tools enable purchasers, policymakers, health plans, providers, and patients to improve care. Specific activities in fiscal year 2000 to expand the number of tools include:

  • Research grants to build on investments in 1999 to develop and test quality measures that meet the expressed needs of payers and purchasers of health care including:
    1. CAHPS® enhancements for application within institutions, e.g., for care within nursing homes and other institutional settings.
    2. New measures for children including chronically ill and disabled children.
    3. New methods and tools to address cultural sensitivity and other issues of importance to racial/ethnic minority populations, working in partnership with Historically Black Colleges and Universities (HBCUs) and Hispanic Service Institutions (HSIs).
    4. New HCUP quality indicators.

    Within these areas will be a specific focus on diabetes mellitus to provide new tools in the care for this illness which exerts a disproportionate toll on minority populations ($1.650 million).

  • Research grants to develop and test new uses of informatics, information technology, and web-based applications to improve outcomes; quality; and the cost, use, and access to health care including: (1) applications of the electronic medical record (in partnership with the National Library of Medicine), (2) the use of clinical decision support systems, and (3) innovative Web-based applications to deliver evidence and research-based information to users that build on CONQUEST and the National Guideline Clearinghouse™ ($1.200 million).

Step 3: Nurture next generation of health services researchers ($1.500 million). In fiscal year 2000, AHCPR will invest in four programs to further the training of health services researchers to address the research and analytic needs of the changing health care system. These priorities will build on prior efforts to make both curricula and practical research experiences more relevant to decisionmakers' concerns about the effectiveness of health care and issues of cost, quality, and access. Further, they will be designed to reflect and incorporate evolving innovations in data systems and research tools so that the researchers of the future not only identify and address significant research questions, but also employ cutting edge methodological, analytic, and data handling techniques, including appropriate privacy and confidentiality safeguards.

  • Mentored Research Scientist Development Program. Opportunities will be provided to new investigators to obtain additional, concentrated research experience (as well as any necessary training) to facilitate the transition from a trainee or fellow status to that of an independent investigator with an established area of research expertise and demonstrated productivity. Just as changes in the health care delivery system have created greater demands for persons with highly developed research and analytic skills, those same changes have lessened the ability of academic health centers to support and mentor junior investigators with the potential to address those demands.

    Several studies have noted that academic health centers, in response to their changing environments, are placing greater emphasis on financial issues and the provision of clinical services and relatively less emphasis on education and research. Further evidence suggests that managed care growth and more generalized cost-cutting pressures may adversely affect the ability of researchers to secure the time or resources to conduct research Training support from foundations is declining and that provided by private organizations and industry is typically limited and highly focused to serve the immediate needs of the employer. Thus, the need for Federal support is increasing.

  • Strengthening the Research Infrastructure for Children and Minority Populations. The need for general health services research training support notwithstanding, there are also specific needs for researchers to address issues relevant to particular population groups for which research capacity is particularly inadequate. This initiative initially would train researchers to focus on topics of special relevance to minority populations and children; additional population groups could be targeted subsequently.

    In addition to providing a solid foundation in general health services research methods and concepts within a multidisciplinary environment, special emphasis will be placed on the unique needs of the identified population groups. As part of this initiative, we will specifically recruit HBCUs and HSIs to apply independently, or in partnership with other institutions, to develop programs to train minority investigators. AHCPR will be able to fund between 2 and 5 institutions that will train between 8 and 15 investigators.

    Programs emphasizing training for research focused on minority health care issues will include such areas as: the socioeconomics of health care, cultural competency, and methods for facilitating community participation in research. Research training programs emphasizing the needs of children should include content in such areas as: screening and prevention, developmental guidance, the impact of disabilities and chronic illnesses, and the characteristics of child health including physical and emotional development and family dynamics. Training in practice-based research at the community level will also be encouraged. The intent is to expand the pool of investigators trained to address gaps in knowledge related to the health care of children and minority populations and build the capacity of minority serving institutions.

  • Enhanced Health Services Research Dissertation Grant Program. One of AHCPR's most successful grant programs has been its support for dissertation research. With this relatively small investment (currently about $30,000 in direct costs per grant), AHCPR has expanded the ranks of highly productive researchers throughout the country in academia, government, and the private sector, as well as within AHCPR's intramural research program. Preliminary evaluations suggest that applicants who receive dissertation grant support are more than twice as likely as nonrecipients to receive subsequent Public Health Service research grant awards and, presumably, go on to successful research careers. The fiscal year 2000 request will support an additional 7 to 10 trainees.
  • Addressing Privacy and Confidentiality in Health Care Research. The current debate on privacy and appropriate access to personally identifiable health care information could lead to restrictions that could seriously threaten the Nation's ability to conduct health services research and improve the quality of care. It is incumbent on the research enterprise to demonstrate that research can be carried out without injury or disclosure. AHCPR will fund grants to mobilize the research community, health care providers and the public in directly addressing the growing concerns about the privacy of health care information including: (1) develop guidance and tools for institutional review boards to assure appropriate patient protections, (2) review existing databases and their applications in research and quality of care and develop draft privacy standards in collaboration with the private sector, and (3) educate consumers and patients about their rights as well as the value of having access to information for the purposes of research and quality improvement.
  • Violence Against Women (VAW) Fellowship Program. The fiscal year 2000 request supports development of a new VAW Fellowship Program. It would provide promising academic and clinical professionals with an opportunity to expand their knowledge and understanding of violence against women issues through a structured development program. The fellowship program would be broadly designed to serve HHS as a whole, and fellows would apply to any HHS Agency able to support the fellowship.

    Fellows will be offered a well-designed mentorship and training program. The goal is to broaden their background and enhance their leadership skills through the research, development, analysis, or other work they undertake on programs intended to prevent and reduce violence against women. The first AHCPR VAW fellow would work on health services research issues related to the outcomes, effectiveness and cost-effectiveness of the violence prevention and treatment programs available in organized health care settings.

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