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The financing and provision of health care in the United States is distributed across many distinct organizations, each with its own objectives, obligations and capabilities. These fragmented organizational structures produce disrupted relationships, inadequate information flows, and misaligned incentives that combine to degrade the quality of health care and increase costs. This chapter analyzes the causes and consequences of organizational fragmentation in the health insurance and care delivery systems. It also assesses the ability of modern information technology to mitigate the costs of fragmentation by enhancing coordination across organizations.

Previous chapters have provided the historical context and the justification for a set of four core aims of health care policy in light of the requisites of citizenship in a democratic society, and then the basic structure of a reformed national health care system designed to achieve those core aims. Briefly stated, the four core policy aims include: comprehensive health insurance coverage with adequate and equal risk protection, the amelioration of disparities in health care access and quality, equitable comprehensive care and public health investments, and compensatory investments in health care services and public health infrastructure for groups adversely affected by health disparities. This chapter illuminates the major dimensions of health care system performance that are most closely linked to these core policy aims, the range of health care system measures specific to each dimension of performance, and those that appear optimal in light of validity and the pragmatics of data system design and sustainability. The chapter then concludes with a discussion of the criteria for health care policy “success”.

This chapter discusses the following topics: aspects of quality in health; quality improvement methods; clinical audit; patient safety; evidence-based practice; clinical guidelines; and getting knowledge into practice.

This chapter covers the principles of health services research, which is critical for understanding and reducing the burden of neurological disease across populations. The goal of neurologic health services research is to create a scientific basis for measurably improving the care that is provided to patients with both chronic and acute neurological conditions. It is multi-disciplinary research that draws on the expertise of neurologists trained in clinical research methods, economists, biostatisticians, epidemiologists, sociologists, and other social scientists. Typical sources of data for health services research studies are surveys and interviews, medical records, and administrative data sets. Most health services researchers employ a combination of quantitative and qualitative research methods, and they work in collaboration with health care administrators and organizations in which health care is provided in the US. The chapter encompasses the design and execution of studies of access to care, quality of care and outcomes research, effectiveness, and cost-effectiveness.

This chapter presents background on the nature of health policy and the role of regulation in translating policy into action. It describes the fundamental policy goals of improving quality, enhancing access, and controlling costs and the ways in which they compete, as improvements in one goal inevitably harm one or both of the others. Over the course of the 20th century, the primary emphasis of most new regulatory initiatives evolved from quality to access to cost. The chapter then explains the process of regulation and the legal rules for governmental regulatory agencies, particularly the federal Administrative Procedures Act. It also describes the basic structure of the largest regulatory body of all, the Federal Department of Health and Human Services. It concludes with a discussion of perennial policy conflicts, including the balance between regulation and market forces, between private and governmental regulation, and between state and federal primacy in regulation.

This chapter starts by describing the importance of interpersonal communication and relationships between patients and clinicians for ensuring high quality health care, drawing upon numerous studies that report better clinical outcomes with better communication. It then presents various challenges to interpersonal communication between patients with disabilities and clinicians, ranging from issues such as attitudes of clinicians to lack of accommodations for persons who are blind, experience low vision, deaf, or hard of hearing. The chapter presents examples of inadequate or damaging interpersonal communication. It raises particular concern about discussions of potentially sensitive topics, such as sexuality and reproductive health, mental health, and substance abuse.

This chapter explores how persons with disabilities find doctors and other health care professionals to provide primary and specialty care. It presents information about health care services used by persons with disabilities. It looks at different approaches for paying for health care services and describes how persons with disabilities must pay considerable costs out-of-pocket. The costs of accommodating disabilities, such as expenses for sign language interpreters, are also described. The chapter addresses a particularly challenging problem, as young adults with disabilities try to transition from the pediatric health care settings of childhood into the adult health care sector.

Shifting the paradigm of care from traditional roles of clinicians directing patients to a model of collaboration in care has gained currency as a strategy for improving both health care quality and outcomes. This chapter describes self-management and collaborative care programs, which are well developed for certain chronic conditions (such as arthritis and diabetes). It then discusses various considerations in moving toward a self-management and collaborative care approach for persons with disabilities. The core to any such effort is for clinicians to listen to and learn from their patients with disabilities, who are often the experts about their health and needs. The chapter looks at accessibility of self-management and resources and technologies to aid self-management.

This introductory chapter provides demographic information about the prevalence of disability among U.S. residents and outlines population trends suggesting rising numbers of persons with disabilities. It also reviews concerns about health care quality in the United States, drawing upon reports of the Institute of Medicine and other sources to describe worrisome quality shortfalls, especially affecting persons with chronic health conditions. It suggests that persons with disabilities confront particular risks of receiving substandard care, along a variety of dimensions of quality and access.

This chapter offers suggestions for improving open and effective patient-clinician communication. The first step involves training clinicians to recognize communication barriers. All members of health care organizations, from senior leadership to front-line office assistants, require training to enhance awareness of potential communication barriers and strategies for accommodating communication needs. The chapter reviews various approaches for improving communication, as well as training clinicians to improve their interview and interaction skills with patients with disabilities. Training should include efforts to increase sensitivity to stigmatizing attitudes and other social barriers experiences by persons with disabilities. The chapter also discusses clinicians with disabilities.

This chapter examines the issue of paying more to physicians who perform better on some predetermined criteria. The debate is not about paying more for better service, but about whether the quality of physician services can be measured accurately by an external body so that these incentives can improve patient care without wasting money and creating an environment in which gaming to attain higher payment might occur. The chapter reviews economic evidence on pay for performance and summarizes relevant research findings from the fields of social psychology and sociology. It also looks at alternative mechanisms for controlling health care provider behaviors, with an emphasis on pay for performance for physicians rather than physician groups or health care provider organizations (for example, multiprofessional clinics or hospitals). The discussion focuses on many aspects of health care quality, including clinical effectiveness, efficiency, and patient centeredness.

This chapter explores communication between patients with disabilities and clinicians about “technical” matters—the purportedly objective “facts” that guide clinical decision making, such as discussions about symptoms, signs, therapeutic options, and treatment side effects. It discusses concerns that clinicians may have inadequate scientific knowledge about many disabling conditions, and they therefore make decisions based on their personal views of patients' quality of life rather than objective medical evidence. Conflicts can arise when clinicians fail to appreciate the value persons with disabilities place on their lives. The chapter also discusses problems making clinical information, such as recommendations for treatments and warnings about side effects, accessible to persons with impaired vision or hearing. Failure to accommodate patients' communication needs can compromise patients' safety.

This chapter describes the principals and practice of evidence-based medicine (EBM), its limitations, and future directions for EBM. The goal of EBM is to provide high quality information in “real time” for neurologists to use in practice. Evidence-based medicine provides a set of tools to formulate a clinically important question about a particular patient and to efficiently access and critically evaluate relevant information. Neuroepidemiologic studies provide the groundwork for evidence-based medicine by supplying research about patient risk, prognosis, and harm.

This chapter presents evidence on two of the five myths of medical malpractice listed in Chapter 1. It first addresses the myth that only “good” doctors are sued, showing that both high- and low-quality physicians are sued for medical malpractice. The second myth is that medical care is costly because of medical malpractice. At most, only a small part of the growth in real expenditures on personal health services in the United States can be attributed to medical malpractice. The chapter considers whether there is empirical evidence that medical malpractice creates access barriers to health care services and increases the cost of such services. Much of the conventional wisdom is that there is clearly a link of sufficient importance to require statutory changes.

This chapter evaluates the differences in treatment patterns and the relationship between treatment patterns and health care quality among acute myocardial infarction (AMI) patients in United States and Japan. The Cooperative Cardiovascular Project (CCP) patients tend to be more aggressively treated by beta-blockers than Japanese patients, and it is observed that collaborative medical centers in the data tend to perform intensive procedures more often. There is significant heterogeneity among patients and in treatments that could influence the quality of care among elderly AMI patients. It is also found that high-tech treatments would significantly enhance patient outcomes and would increase hospital expenditures. CCP patient who undergoes an intensive procedure tends to stay in a hospital longer compared to the one who does not, while a patient who undergoes an intensive procedure in Japan is inclined to stay in the hospital for a shorter period.