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Policy Information Center Highlights: Vol. 2, No. 1

In This Issue:



Each year more than 700,000 Americans die of heart disease. After decades of research, the scientific community has developed drugs, medical devices, and procedures that can effectively treat many types of heart disease; however, few treatment options exist for individuals who suffer from end-stage heart disease. Until now, the only effective treatment for end-stage heart failure has been transplantation, but lack of donor hearts has limited the number of transplant recipients to 2,000 per year.

For more than 25 years, the federal government has worked to develop medical devices that will assist the ailing heart. Through the artificial heart program of the National Heart, Lung, and Blood Institute (NHLBI), federal research has focused on ventricular assist devices (VADs) and total artificial hearts (TAHs). VADs are temporary devices that aid the failing heart, and TAHs are long-term devices that actually replace the heart.

The report, The Artificial Heart: Prototypes, Policies, and Patients, reviews the NHLBI program at a critical time because the first model of a fully implantable VAD will undergo clinical trials in 1992. The report also examines issues that NHLBI will consider in funding the artificial heart program, such as the number of patients who could potentially receive VADs or TAHs, the cost and clinical effectiveness of this technology, and the extent to which artificial hearts will enhance patients' quality of life.

To conduct the study, a 17-member committee whose members are experts in cardiothoracic surgery, cardiovascular and internal medicine, program planning and evaluation, health policy, ethics, economics, and law met four times, sponsored public meetings, and held two workshops. The committee also commissioned five background papers and reviewed medical, scientific, and health policy literature.

The report finds that, although it is considerably less cost-effective to use TAHs than to use other types of treatment, the potential benefits to patients justify continued federal support for TAH development. Continued funding may expedite the device's approval by the Food and Drug Administration (FDA) and make the technology available to patients who would otherwise die. This interim period will also benefit the program in a number of ways. First, by the end of this time the results of clinical trials may be available, allowing policymakers to make more informed decisions about the effectiveness of artificial heart devices. Second, the interim period will allow NHLBI, the developers of medical devices, and others to develop clinical practice guidelines ensuring the appropriate use of artificial heart technology. Finally, policymakers can use the interim period to decide whether these devices should be covered under public and private insurance.

The study recommends that NHLBI continue to support the four research groups developing TAHs, to the extent warranted by the scientific merit of their work, for two to three years after their current contracts expire in September 1993. The report also advises that TAH research be reconsidered in 1994 or 1995 and that NHLBI decide whether to move ahead with the next phase of TAH development at that time.

The study was conducted by the National Academy of Sciences, Institute of Medicine, under contract to the National Institutes of Health, National Heart, Lung, and Blood Institute. The study's project officer, Barbara Packard, can be reached on 301-496-6331. Copies of the executive summary, #4280, are available from PIC.



In recent years various sectors of the health care system have begun demanding access to patient records. Third-party payers need patient data to make coverage decisions, researchers need statistics to ensure that national health objectives are met, and administrators of health care institutions need information to manage the quality of care their facilities provide.

At the same time, the volume and complexity of patient records have increased because patients are living longer, experiencing more chronic diseases, and making more visits to health care professionals. Current patient records, which are predominantly made of paper, have not kept pace with today's rapidly changing health care system. These types of records may be illegible, may be missing information, may contain so much information that they hamper decision making, may be poorly organized, and may make it difficult to transfer information from one health care provider to another.

The report, The Computer-Based Patient Record: An Essential Technology for Health Care, examines the need that exists for computer-based patient records (CPRs), the ways in which CPRs will benefit users, the technologies that will facilitate the development of entire CPR systems, and the barriers that have prevented these systems from being implemented in the past.

The CPRs envisioned here are more than simply automated versions of today's patient records. Rather, CPRs are part of entire data systems that will allow authorized users to retrieve patient data 24 hours a day; eliminate the need for handwriting, thus improving the legibility of records; assist practitioners in making decisions; and enhance the productivity of health care professionals.

The study finds that, although many of the barriers to the development of CPR systems have disappeared, a number of issues still must be addressed before CPR systems can be implemented. First, potential users must understand the capabilities and benefits of using these types of systems. Second, laws and regulations must be established to protect patient privacy without preventing legitimate users from accessing data. Finally, institutional, local, regional, and national data networks for transmitting CPR data must be developed.

The report concludes that a major initiative is needed to make CPRs a standard technology within a decade, but that no currently existing organization has the mandate or the resources needed to lead this effort. Accordingly, the report recommends that a Computer-based Patient Record Institute (CPRI) be formed to facilitate the development, implementation, and dissemination of CPRs.

Other recommendations include that (1) health care professionals adopt CPRs as the standard for recording patient data; (2) the public and private sectors expand support for CPR systems through research, development, and demonstration projects; (3) the CPRI facilitate the implementation of CPR systems by developing national standards for data and security; and (4) health professions schools and organizations enhance educational programs for students and practitioners by teaching the use of computers, CPRs, and CPR systems for patient care, education, and research.

The study was conducted by the National Academy of Sciences, Institute of Medicine, under contract to the Health Care Financing Administration and the Health Resources and Services Administration, with additional funding provided by the Agency for Health Care Policy and Research. Copies of the executive summary, #4279, are available from PIC.



Microsimulation models are analytical tools that enable decision makers to estimate the impact of alternative policies. These models are useful for policy analysis because they show how changes will affect individuals, rather than aggregate groups. Using microsimulation models, analysts can determine how various income support policies will affect families or how health care reimbursement programs will affect doctors and hospitals.

Although the demand for social welfare policy analysis has gained strength in recent years, largely because of changes in America's population, economy, and society, few evaluations have focused on the quality of policy analysis tools, among them microsimulation models. The report, Improving Information for Social Policy Decisions: The Uses of Microsimulation Modeling--Volume I: Review and Recommendations, assesses the strengths and weaknesses of microsimulation models and recommends ways to improve their usefulness for policy analysis.

To conduct the study, members of the Panel to Evaluate Microsimulation Models for Social Welfare Programs identified the major deficiencies of current microsimulation models and reviewed specific laws that were shaped using these types of models. Members, staff, and consultants of the panel also prepared technical papers on the types of models most often used in analyzing social welfare programs, the ways in which analysts can validate the data produced by microsimulation models, and the technological improvements that will enhance the capabilities of these models.

First, the study finds that model-based estimates of the effects of proposed policy changes often play pivotal roles in legislative debate; however, decision makers rarely receive information about the quality of these estimates. The report suggests that three techniques--external validation, sensitivity analysis, and variance estimation--can help analysts better judge the accuracy of their estimates.

Second, good data are critical to making useful policy estimates, yet federal investments in the development of high-caliber, relevant data have declined. Also, very little work has focused on the quality of the survey information used as input data for microsimulation models.

Finally, the federal statistical system is highly decentralized, with a number of agencies collecting information on health care financing, income, and other issues; therefore, interagency coordination is needed to ensure effective data production.

Accordingly, the report recommends that (1) users of policy projections systematically demand information about the level and sources of uncertainty in model-based estimates; (2) the heads of policy analysis agencies ensure, to the extent feasible, that their staff regularly prepare information on the accuracy of their estimates; (3) the federal government increase its support for high-caliber statistical data for social welfare policy analysis and other purposes; (4) responsible agencies sponsor in-depth evaluations of the quality of the administrative information used as data sources for social welfare policy microsimulation models; and (5) the federal government strengthen its investment in the coordination of federal statistical activities.

This report was prepared by the National Academy of Sciences, Committee on National Statistics, under contract to the Office of the Assistant Secretary for Planning and Evaluation. The study's project officer, Joan Turek-Brezina, can be reached on 202-245-6141. Copies of the executive summary, #3297, are available from PIC. Also available is the executive summary to the second volume of the report, #3297.1, which contains the technical papers.



Services integration (SI) refers primarily to ways of organizing the management and delivery of services to people at the local level. Concretely, service integration means a coordinated delivery of a comprehensive range of services, using a holistic approach to the individual or family, which provides a rational allocation of resources at the local level so as to be responsible to individual and family needs. In the 1970s and 1980s, the Department of Health, Education, and Welfare (HEW) and its successor, the Department of Health and Human Services (HHS), undertook a number of initiatives to integrate the management and delivery of human services.

The reports, Services Integration: A Twenty-Year Retrospective and Services Integration for Families and Children in Crisis, determine what has been learned from SI projects during the past two decades and review SI initiatives targeted to families troubled by substance abuse, domestic violence, lack of housing, and child abuse. To compile the studies, the Office of Inspector General (OIG) reviewed literature on previous SI efforts launched by HEW and HHS, surveyed more than 70 experts to identify innovative programs for dysfunctional families, and performed on-site fieldwork at 13 organizations in 9 states and the District of Columbia.

The studies find that, although previous SI efforts have been instrumental in making services available to clients, the human services system still remains highly fragmented. Past SI initiatives have been hampered by the size and complexity of the human services system and by funding limitations. Also, the constituency for SI is weak compared to the support that exists for specific groups such as the aged and disabled. Future SI projects, therefore, will stand a better chance of succeeding if they focus on well-defined target groups, seek to effect modest changes rather than institutional reform, and cultivate networks of the various proponents of SI, including government officials, members of private agencies, and academicians.

SI projects that are specifically targeted to families in crisis vary in their administration, budget, target population, and staffing; however, their clients' most common problems are similar--substance abuse, housing shortages, and lack of parenting skills. These projects serve their clients by using case management and interagency agreements, by locating a wide range of services at the same facility, and by simplifying the process of applying for multiple programs. The staff of these projects have overcome difficulties such as professional and philosophical differences and resource constraints by emphasizing the importance of staff persistence, by developing effective working relationships with other agencies, and by fostering political support.

Finally, administrators of the 13 projects reviewed here find that achieving SI requires more physical space and more staff time to plan and coordinate additional services. On the other hand, SI also eliminates the duplication of services, reduces the amount of time staff spend on making referrals, and allows several agencies to share the same equipment. Additionally, SI initiatives prevent costly social problems such as substance abuse, teen parenthood, and delinquency.

Because these initiatives have made services more convenient, accessible, and complete for clients and have yielded long-term benefits to society, program officials conclude that the benefits of SI outweigh the costs.

These studies were conducted by the Office of Inspector General (OIG). Copies of the executive summaries, #4239 and #4239.1, are available from PIC.


Recently Acquired Reports

  • Family-Centered Comprehensive Care for Children with HIV Infection
  • Research and Research Findings on Women's Health Issues
  • Health Care Spending Control: The Experience of France, Germany, and Japan



The Policy Information Center (PIC) is a centralized source of information on in-process, completed, and on-going evaluations; short-term evaluative research and; policy-oriented projects conducted by HHS as well as other Federal departments and agencies. The PIC on-line database provides project descriptions of these studies. It is available on-line at: Inquiries regarding PIC services should be directed to Carolyn Solomon, Technical Information Specialist, at 202-690-5694. Or E-mail PIC at:

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