Enhancing Data Systems to Improve the Quality of Cancer Care (2000) / Chapter Skim
Currently Skimming:
Status of the Cancer Care Data System
Status of the Cancer Care Data System
Pages 46-75
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data systems for local quality assurance purposes, 8. public reporting of selected aggregate quality scores, 9.
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that show a link between a particular process of care and better outcomes. Once this link has been established, systems can be put into place to monitor adherTABLE 5.1 Examples of Process Measures Used to Assess Quality of Cancer Care Cancer Site Process Measure Breast Colon Rectum Prostate Small-cell lung cancer (SCLC)
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appointment of an Oncology Measurement Advisory Panel to review measures relevant to cancer care (Oncology News, 1999; Winn, 1999~. NCQA accredits managed care plans and has produced a widely used report card monitoring system called the Health Plan Employer Data and Information Set SWEDISH)
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Cancer quality indicators have, for example, recently been identified for six cancer sites (breast, cervical, colorectal, lung, prostate, skin) as part of a comprehensive quality measurement system designed to assess quality within managed care plans (Malin et al., 2000~.
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The board is encouraged that first steps toward the development of a core set of cancer care quality measures have been taken, and it hopes that its vision of a public/private collaboration on its creation will be realized. The mechanisms for such a collaboration appear to be in place.
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Until physicians increase their use, the potential for the Internet or Intranets (controlled-access versions of the Internet) to improve the timeliness of reporting between clinicians and cancer registries will not be met.
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Nevertheless, these instruments have been used to classify comorbidity in several types of cancers and have performed well (Piccirillo, 1999~. Very accurate assessments of comorbidity can be made with information from medical records, and recommendations have been made to train cancer registrars to code comorbidity and to include this information as a required data element in cancer registries (Piccirillo, 1999~.
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Currently, no national benchmarks of the quality of cancer care exist. The source with the greatest promise for delivering representative samples of patients with which to measure the quality of cancer care is the state cancer registries, recently organized into the National Program of Cancer Registries (NPCR)
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The central purpose of state cancer registries is cancer surveillance, monitoring the burden of cancer for a given population. When registration activities are organized to obtain complete counts of cancer for a given population (e.g., a state)
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(Aldrich et al., 1995~. Responding to the needs of states, Congress established the NPCR in 1992 (Cancer Registries Amendment Act, P.L.
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State cancer registry data are limited as far as studies of cancer care quality are concerned. The registries were not originally intended to serve this function, but data elements have been added in some states to facilitate quality studies.
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is recorded in SEER, but adjuvant therapies are not. In general, the SEER data suffer the same problems as NPCR state registry data in terms of their stand-alone capacity to be used to answer questions about the quality of care (e.g., lack of information on comorbidity)
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Missing from NCDB are cases diagnosed and managed in community-based private practice office settings (e.g., many cases of melanoma, prostate cancer)
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, closely associated with the International Agency for Research on Cancer (IARC) , is a membership organization of international cancer registries "concerned with the collection and analysis of data on cancer incidence and with the end results of cancer treatment in defined population groups" (Wagner, 19914.
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Benchmarks are integral to healthcare quality improvement initiatives but with few exceptions have not been established for cancer care. Methods to quantify "Achievable Benchmarks of Care" (ABC™)
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DATA SYSTEMS FOR LOCAL QUALITY ASSURANCE PURPOSES Once benchmarks are established, hospitals, health plans, and provider groups should be able to assess their care relative to national or regional norms and identify ways that care could be improved. Individual providers who are working within large systems, for example, an integrated delivery system, or who are caring for employees of big companies or subscribers of large insurers, may be subject to quality improvement programs.
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HELLISH is a performance measurement tool designed to assist purchasers and consumers in evaluating managed care plans and holding plans accountable for the quality of their services. Because HEDIS~ has standard measures and uniform data reporting requirements, comparisons can be made across various health plans and their organizational structures (e.g., staff-model HMOs, pointof-service plans)
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Joint Commission on the Accreditation of Healthcare Organizations The nonprofit JCAHO, the oldest and largest standard-setting and accrediting body in health care, has broadened its institutional coverage from solely hospitals to a wide array of delivery systems, including health plans, integrated delivery networks, PPOs, home care organizations, nursing homes and other longterm care facilities, behavioral healthcare organizations, ambulatory care providers, and clinical laboratories. JCAHO evaluates and accredits more than 19,000 healthcare organizations in the United States (wwwjcaho.org)
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Public Reporting of Aggregate Quality Scores The board has recommended that "Cancer care quality measures should be disseminated widely and communicated to purchasers, providers, consumer organizations, individuals with cancer, policy makers, and health services researchers, in a form that is relevant and useful for healthcare decision-making" (IOM, 1999a)
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No legal action regarding a breach of confidentiality from cancer registries has been reported, but concerns about privacy and confidentiality are increasing as data are being transmitted electronically and cancer registry data are being merged with other sources (Coleman et al., 1992; Newcombe, 1995~. Personal identifiers, including name, birth date, and social security number are required data elements in the NPCR and NCDB because effective cancer registration involves the collection and Health information privacy is an individual's claim to control the circumstances in which personally identifiable information is collected, used, and transmitted (Hodge, 19994.
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. According to this act, states must promulgate regulations providing "for the protection of the confidentiality of all cancer case data reported to the statewide cancer registry, including a prohibition on disclosure to any person of information reported to the statewide cancer registry that identifies, or could lead to the identification of an individual cancer patient, except for disclosure to other State cancer registries and local and State health officers" (P.L.
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The CDC plans to pool state cancer registry data into a Cancer Surveillance System (CSS) to provide national estimates of cancer incidence and to facilitate epidemiologic and health services research.
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While these issues will need to be resolved, there are examples of successful data aggregations and linkages the NCI has pooled cancer data from its participating registries and linked them to Medicare files while adhering to strict privacy and confidentiality rules (see description of the Medicare-SEER linkage studies in Chapter 4~. SUMMARY Relative to the ideal described in Chapter 2, current data-systems applicable to cancer care quality assessments have serious shortcomings.
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