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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Executive Summary The National Cancer Policy Board (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 board 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 health care in the United States, with 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. Data systems are the backbone of efforts to improve the quality of health care. Performance data can provide the impetus for providers, health plans, and systems of care to change. Experience suggests that quality within health systems can improve when organizations measure and monitor performance, encourage change through incentive systems and education, and hold providers accountable to the quality expectations of purchasers and consumers. Data systems can also help gauge the status of cancer care across the nation, alerting political, professional, and advocacy leaders to the need for action. An active health services research community furthers quality improvement by using data systems to determine correlates of quality cancer care and to elucidate the reasons for poor quality care. Quality assessment studies should ideally include recently diagnosed individuals with cancer in care settings representative of contemporary practice across the country and rely on information sources in sufficient detail to allow
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care sound analyses (IOM, 1999a). Despite investments by federal, state, and private groups in cancer-related data systems, there are gaps in the availability of data needed to conduct quality-of-care studies, redundancies in data collection, and problems with the completeness, timeliness, and quality of the data that are collected. At the same time, there are tremendous opportunities to improve cancer care data systems through: movement toward a comprehensive and coordinated national system, leadership within the cancer care community, cooperation among groups providing cancer data, integration with national efforts to further quality of care, and the application of new information technologies (e.g., computer-based patient records, Internet communications). The board held a workshop in October 1999 to establish the characteristics of an ideal cancer care data system and to identify financial and other resources needed to help achieve that ideal. This report summarizes the workshop proceedings and board deliberations, then presents the board's recommendations for steps that can be taken to enhance current data systems to improve cancer care. The report addresses three questions: What would the ideal cancer care data system look like? 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? WHAT WOULD THE IDEAL CANCER CARE DATA SYSTEM LOOK LIKE? The board concluded that to meet national quality-of-care objectives, an ideal cancer care data system (which could include several distinct databases) would have the following 10 attributes: A set of well-established quality-of-care measures—a single core set of quality measures must be developed, using the best available evidence for the full spectrum of an individual's care—from early detection to palliative and endof-life care. Reliance on computer-based patient records for information on patient care and outcomes—adoption of information technology can improve the timeliness and accuracy of information on the quality of cancer care. Standard reporting of cancer stage, presence of coexisting disease (i.e., comorbidity), and processes of care—national quality assessments depend on the uniform recording of data elements needed to accurately assess care.
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care National, population-based case selection—complete ascertainment of incident cancer cases by cancer registries is a prerequisite for national quality assessments, allowing ease selection for studies whose results can be generalized to the total population and assessments of quality for important subgroups—for example, individuals of low socioeconomic status and individuals enrolled in certain types of health plans or delivery systems. Repeated cross sectional studies to monitor national trends—a series of measures is needed to monitor progress over time. Established benchmarks for quality improvement—systems of care need information on accepted standards of care (e.g., clinical practice guidelines) with which to assess their performance. Data systems for internal quality assurance purposes—systems of care need internal data to monitor performance and quality improvement. Public reporting of selected aggregate quality scores—quality measures enable consumers and purchasers to judge the quality of a system of care by its performance relative to evidence-based standards. Adaptability—new evidence on quality measures, changes in healthcare delivery, and technological innovation are among the factors that necessitate flexibility in data systems. Privacy protections—legal protections and data security systems must be in place to ensure that data collected and stored about an individual's diagnosis and treatment of cancer are used only for legitimate purposes. HOW ARE CURRENT CANCER DATA SYSTEMS MEETING THE NEEDS OF HEALTHCARE SYSTEMS? The board's review of current cancer care data systems suggests that we are far from the ideal. Relatively few healthcare systems are monitoring the quality of cancer care. Serious barriers impeding such efforts include: a lack of recognized measures of quality; an absence of benchmarks with which to measure progress and success; reliance on hospital-based data retrieval, while cancer care is shifting to ambulatory care settings; reliance on retrospective medical chart reviews for data, a method that is labor intensive, inefficient, and prone to error relative to the prospective electronic capture of information possible through computer-based patient record systems; methodologic difficulties (e.g., adequacy of sample sizes for comparison, availability of data with which to control for differences in patient mix); and concerns about protecting the privacy and confidentiality of patient information.
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Advances in information technology and the evolution of fully integrated systems of care may ultimately resolve some of the problems associated with existing data systems. Computer-based patient records and electronic communication have the potential to greatly improve the quality, comprehensiveness, and timeliness of data. And data systems built to meet the needs of disease management programs could capture information on an individual's full episode of care, regardless of where in the system care was provided. Such developments are, however, likely years away from widespread application and are in part dependent on resolving policy issues concerning the maintenance of confidentiality of patient information. In the short term, three national cancer-related databases hold great promise to further quality improvement efforts: the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC); the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI); and the National Cancer Data Base (NCDB), sponsored by the American College of Surgeon's Commission on Cancer (ACoS-CoC) and the American Cancer Society. NPCR and SEER are cancer surveillance systems with a primary mission of providing population-based estimates with which to understand the occurrence and distribution of cancer. These surveillance systems can also become powerful tools for assessing quality of care when linked to other data sources or when used to select individual cases for special studies. Surveillance databases have great potential to provide population-based estimates of quality-of-care problems. Despite the value of these databases, sustaining them is difficult, let alone expanding their use for quality measurement. Most states do not have the resources to augment their current workload to conduct studies of quality care, which fall outside their primary mission of cancer surveillance; many states struggle merely to ensure that basic cancer surveillance continues. The ACoS-CoC and the American Cancer Society have long supported the examination of quality of cancer care through the most extensive national data collection effort dedicated to this purpose, NCDB. NCDB has tremendous potential to provide detailed information regarding quality to the facilities that report to it, thereby encouraging improvements in performance. As a source of national information on quality, however, NCDB has limitations because of its lack of complete coverage. Only facilities with cancer programs approved by ACoS-CoC must report data to NCDB, and most of these are hospitals. Cases that tend to be missed in NCDB are those diagnosed and treated in unapproved facilities and ambulatory care settings. While NCDB is not nationally representative, estimates are that roughly 80 percent of incident cancer cases are reported
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care to NCDB, making it a powerful resource for internal quality assessments within sites of cancer care serving the majority of Americans. Of all available systems, NCDB includes the most extensive set of treatment-related items. NPCR and SEER include first course treatment, but little else. Gathering data on chemotherapy and adjuvant radiation therapy is challenging because the individuals collecting much of the data for data systems, cancer registrars, are generally hospital based. They abstract needed information from the hospital chart. Procedures occurring outside of the hospital (e.g., in community-based, private practice office settings) are usually not recorded in the hospital chart, and because there are generally insufficient resources to track such care, treatment data from cancer registries and databases is often too incomplete to use for quality studies. WHAT STEPS CAN BE TAKEN TO ENHANCE DATA SYSTEMS SO THAT THEY CAN BE USED TO MONITOR AND IMPROVE THE QUALITY OF CANCER CARE? The board recommends that steps be taken in three areas to improve the quality of cancer care: Enhance key elements of the data system infrastructure: quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity. Expand support for analyses of quality of cancer care using existing data systems. Monitor the effectiveness of data systems to promote quality improvement within health systems. 1. Enhance Key Elements of the Data System Infrastructure Recommendation 1: Develop a core set of cancer care quality measures. The secretary of the Department of Health and Human Services (DHHS) should designate a committee made up of representatives of public institutions (e.g., the DHHS Quality of Cancer Care Committee, state cancer registries, academic institutions) and private groups (e.g., consumer organizations, professional associa tions, purchasers, health insurers and plans) to: 1) identify a single core set of quality measures that span the full spectrum of an indi vidual's care and are based on the best available evidence; 2) advise other national groups (e.g., National Committee for Quality Assurance, Joint Commission for the Accreditation of Healthcare Organizations, Quality Forum) to adopt the recommended core set
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care of measures; and 3) monitor the progress of ongoing efforts to im prove standard reporting of cancer stage and comorbidity. Research sponsors (e.g., Agency for Healthcare Research and Quality [AHRQ], National Cancer Institute [NCI], Health Care Financing Administration [HCFA], Department of Veterans Affairs [VA]) should invest in studies to identify evidence-based quality indicators across the continuum of cancer care. Ongoing efforts to standardize reporting of cancer stage and comorbidity should receive a high priority and be fully supported. Efforts to identify quality of cancer care measures should be coordinated with ongoing national efforts regarding quality of care. Recommendation 2: Congress should increase support to the Centers for Disease Control and Prevention (CDC) for the National Program of Cancer Registries (NPCR) to improve the capacity of states to achieve complete coverage and timely reporting of incident cancer cases. NPCR's primary purpose is cancer surveillance, but NPCR, together with SEER, has great potential to facilitate na tional, population-based assessments of the quality of cancer care through linkage studies and by serving as a sample frame for special studies. Recommendation 3: Private cancer-related organizations should join the American Cancer Society and the American College of Surgeons' to provide financial support for the National Cancer Data Base. Expanded support would facilitate efforts underway to report quality benchmarks and performance data to institutions providing cancer care. Recommendation 4: Federal research agencies (e.g., NCI, CDC, AHRQ, HCFA) should support research and demonstration projects to identify new mechanisms to organize and finance the collec tion of data for cancer care quality studies. Current data systems tend to be hospital based, while cancer care is shifting to outpatient settings. New models are needed to capture entire episodes of care, irrespective of the setting of care. Recommendation 5: Federal research agencies (e.g., National Insti tutes of Health [NIH], Food and Drug Administration [FDA], CDC, and VA) should support public-private partnerships to develop technologies, including computer-based patient record systems and intranet-based communication systems, that will improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care.
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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Recommendation 6: Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for training in health services research and training of professionals with expertise in the measurement of quality of care and the implementation and evaluation of interven tions designed to improve the quality of care. 2. Expand Support for Analyses of Quality of Cancer Care Using Existing Data Systems Recommendation 7: Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for health services research, especially studies based on the linkage of cancer registry to administrative data and special studies of cases sampled from cancer registries. Resources should also be made available through NPCR and SEER to provide technical assistance to states to help them expand the capability of using cancer registry data for quality improvement initiatives. NPCR should also be supported in its efforts to consoli date state data and link them to national data files. Recommendation 8: Federal research agencies (e.g., NCI, AHRQ, HCFA) should develop models for the conduct of linkage studies and the release of confidential data for research purposes that pro tect the confidentiality and privacy of healthcare information. 3. Monitor the Effectiveness of Data Systems to Promote Quality Improvement Within Health Systems. Recommendation 9: Federal research agencies (e.g., NCI, AHRQ, HCFA, VA) should fund demonstration projects to assess the application of quality monitoring programs within healthcare systems and the impact of data-driven changes in the delivery of services on the quality of health care. Findings from the demonstrations should be disseminated widely to consumers, payers, purchasers, and cancer care providers.
Representative terms from entire chapter: