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Introduction

The National Cancer Policy Board (hereafter, the board) concluded in its April 1999 report, Ensuring Quality Cancer Care, that based on the best available evidence, some individuals with cancer do not receive care known to be effective for their condition. The magnitude of the problem is not known, but the NCPB believes it is substantial (IOM, 1999a). Why do we know so little about the nature and extent of care-related problems that affect so many Americans? In part, the lack of knowledge is a result of the fragmented nature of the American healthcare system, which has no central point of accountability. There are also more technical reasons, for example, an absence until recently of valid indicators of the quality of care and the lack of comprehensive data systems with which to measure quality.

ROLE OF THE NATIONAL CANCER POLICY BOARD

The board was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20-member board includes healthcare consumers, providers, and investigators in several disciplines (see membership roster). In April 1999, the board released a report, Ensuring Quality Cancer Care, which:

  • described important elements of the current cancer care “system,” from early detection to end-of-life care, in the context of the rapidly changing healthcare environment;



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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care 1 Introduction The National Cancer Policy Board (hereafter, the board) concluded in its April 1999 report, Ensuring Quality Cancer Care, that based on the best available evidence, some individuals with cancer do not receive care known to be effective for their condition. The magnitude of the problem is not known, but the NCPB believes it is substantial (IOM, 1999a). Why do we know so little about the nature and extent of care-related problems that affect so many Americans? In part, the lack of knowledge is a result of the fragmented nature of the American healthcare system, which has no central point of accountability. There are also more technical reasons, for example, an absence until recently of valid indicators of the quality of care and the lack of comprehensive data systems with which to measure quality. ROLE OF THE NATIONAL CANCER POLICY BOARD The board was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20-member board includes healthcare consumers, providers, and investigators in several disciplines (see membership roster). In April 1999, the board released a report, Ensuring Quality Cancer Care, which: described important elements of the current cancer care “system,” from early detection to end-of-life care, in the context of the rapidly changing healthcare environment;

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care identified major barriers that impede access to quality cancer care; defined quality cancer care and described its measurement; provided examples of problems that limit early detection, accurate diagnosis, optimal treatment, and responsive supportive care; reviewed and critiqued systems of accountability that are in place to help ensure the receipt of quality cancer care; assessed whether ongoing cancer-related health services research is addressing outstanding questions about the quality of cancer care; and presented recommendations to enhance cancer care for consideration by Congress, public and private healthcare purchasers, health plans, individual consumers, healthcare providers, and researchers (see report summary in Appendix A). The board found that it was difficult to judge the quality of contemporary cancer care practice from available sources because of: a lack of current data (i.e., many published studies rely on the experience of patients diagnosed and treated in the 1980s), limited information on the care experience across geographic areas and sites of care, and methodological shortcomings (e.g., a lack of control for important clinical characteristics, such as the presence of diseases other than cancer). The board concluded that a cancer data system is needed that can provide quality benchmarks for use by systems of care (e.g., hospitals, provider groups, and managed care systems). An ideal data system would include recently diagnosed individuals with cancer in care settings representative of contemporary practice across the country, using information sources with sufficient detail to allow appropriate comparisons. The board, recognizing that current data systems and quality assessments were far from this ideal, held a workshop in October 1999 to: identify how best to meet the data needs for cancer in light of quality monitoring goals, identify financial and other resources needed to improve the cancer data system to achieve quality-related goals, and develop strategies to improve data available on the quality of cancer care. This report summarizes the workshop proceedings and board deliberations, then presents the board's recommendations for action (see workshop agenda and list of participants in Appendix B). The report addresses three questions: What would the ideal cancer care data system look like?

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care How are current cancer data systems meeting the needs of healthcare systems? What steps can be taken to enhance data systems so that they can be used to monitor and improve the quality of cancer care? This report focuses on enhancing current cancer-related data systems and supplements the board's earlier work, Ensuring Quality Cancer Care (IOM, 1999a). Other work at IOM takes a broader approach to healthcare data systems and quality reporting. A committee has recently been formed at IOM to design a national quality report to provide information on the quality of care provided by the U.S. healthcare industry (see “National Quality Report on Health Care Delivery” under “Ongoing Studies,” Board on Health Care Services, at www.iom.edu). A 1999 workshop (see Appendix B) addressed how information technology can be used to improve quality in health care. Other IOM publications have addressed the measurement of healthcare quality (IOM, 1999b) and advances in computer-based patient records (IOM, 1997). FRAMEWORK OF THE REPORT Chapter 2 describes the attributes of an ideal data system for cancer care quality monitoring. Chapter 3 illustrates, through a series of case studies, ways in which providers, hospitals, health plans, and healthcare purchasers are using available data to assess the quality of cancer care. Chapter 4 summarizes the data infrastructure for health services research. Chapter 5 discusses important elements of a national cancer data system and how the current data system matches the ideal system. Chapter 6 summarizes the report findings and presents the board's recommendations.