Index

A

Access to care, 8, 9, 67, 109, 110, 120–122

patient attitudes and, 48, 121

Accreditation of health care organizations, 5–6, 27, 68–69, 84, 116, 125–126

Accreditation of insurance organizations, 5–6, 27, 48, 68–69, 84, 116, 125–126

National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116

Accreditation of providers, 23, 27, 67, 116, 125–126

Accountability, 1, 8, 9, 11, 18, 25, 66, 73, 86, 94, 110, 111, 115, 125–126

Foundation for Accountability (FACCT), 26, 36, 83, 85

Achievable Benchmarks of Care, 63

Adaptability, see Technological innovations (adaptability)

Adjuvant therapies, 59, 119

breast cancer, 19, 25, 33, 81, 112, 133, 136

colon cancer, 32, 33, 47,

see also Chemotherapy; Radiation therapy

African Americans, 59, 136

Age factors, 33, 65, 132–134 (passim),

see also Elderly persons

Agency for Healthcare Research and Quality (AHRQ), 6, 7, 34, 44, 45, 48, 49, 71, 84–85, 89, 90, 91, 92, 117, 126

Aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78

AIDS Cost and Services Utilization Study, 43

Ambulatory care, 3, 5, 6, 34, 43, 65, 85, 88, 89, 118, 119, 142–143

American Association of Family Physicians, 85

American Cancer Society (ACS), 41–42, 44, 58, 126

see also National Cancer Data Base

American College of Physicians, 85

American College of Radiology, 20, 23–24

American College of Surgeons' Commission on Cancer, 4, 31, 33, 116, 126

see also National Cancer Data Base

American Diabetes Association, 85

American Indians, 59



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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Index A Access to care, 8, 9, 67, 109, 110, 120–122 patient attitudes and, 48, 121 Accreditation of health care organizations, 5–6, 27, 68–69, 84, 116, 125–126 Accreditation of insurance organizations, 5–6, 27, 48, 68–69, 84, 116, 125–126 National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116 Accreditation of providers, 23, 27, 67, 116, 125–126 Accountability, 1, 8, 9, 11, 18, 25, 66, 73, 86, 94, 110, 111, 115, 125–126 Foundation for Accountability (FACCT), 26, 36, 83, 85 Achievable Benchmarks of Care, 63 Adaptability, see Technological innovations (adaptability) Adjuvant therapies, 59, 119 breast cancer, 19, 25, 33, 81, 112, 133, 136 colon cancer, 32, 33, 47, see also Chemotherapy; Radiation therapy African Americans, 59, 136 Age factors, 33, 65, 132–134 (passim), see also Elderly persons Agency for Healthcare Research and Quality (AHRQ), 6, 7, 34, 44, 45, 48, 49, 71, 84–85, 89, 90, 91, 92, 117, 126 Aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78 AIDS Cost and Services Utilization Study, 43 Ambulatory care, 3, 5, 6, 34, 43, 65, 85, 88, 89, 118, 119, 142–143 American Association of Family Physicians, 85 American Cancer Society (ACS), 41–42, 44, 58, 126 see also National Cancer Data Base American College of Physicians, 85 American College of Radiology, 20, 23–24 American College of Surgeons' Commission on Cancer, 4, 31, 33, 116, 126 see also National Cancer Data Base American Diabetes Association, 85 American Indians, 59

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care American Medical Association, 66 American Society of Clinical Oncology (ASCO), 22, 49, 83, 91 Attitudes and beliefs patient satisfaction, see Patient satisfaction patients, other, 48, 121 providers, general, 13, 29, 110 providers, toward elderly, 121–122 public opinion, 109, 110 B Benchmarks, 3, 6, 9, 12, 16, 46, 48, 55, 63, 66, 75, 76, 78, 80, 81, 88, 90, 125 case studies, 21, 36 Biopsies, 25, 30, 47, 70, 112, 137 Black persons, see African Americans Breast cancer, 12, 19, 41, 42, 63, 70, 92, 112, 120, 132–140 adjuvant therapies, 19, 25, 33, 81, 112, 133, 136 case studies, 19, 20, 21, 25–36 (passim), diagnosis, not mammography, 12, 28, 30, 47, 50, 70, 112, 132–140 mammography, 28, 21, 43, 47, 51, 62–63, 66, 111, 112, 137 patient satisfaction, 25, 29, 51 quality-of-care measures, 47, 49, 50–51, 83 radiation therapy, 25, 26, 27, 28, 31, 33, 47, 89, 112, 133, 134, 136, 139 surgery, 25, 26, 28, 30–31, 43, 44, 47, 50, 70, 81, 89, 112, 113, 132–140 survival rates and durations, 21, 26, 29, 139, 140 treatment, 12, 20, 39, 50, 79, 132, 133, 134; see also“radiation therapy” and “surgery” supra C Cancer Registries Amendment Act, 57, 72 Cancer Research Network, 42–43, 126 Case-control studies, 13 Case studies, 10, 18–36, 79, 80 benchmarks, 21, 36 breast cancer, 19, 20, 21, 25–36 (passim), chemotherapy, 21, 22, 25, 26, 33 clinical practice guidelines, 19, 20, 21, 22, 23, 27, 30, 34–35, 79 colorectal cancer, 20, 24, 27, 31, 32–33 comorbidity, 19, 27, 33 computer-based patient records, 19, 20, 22, 30, 79 diagnosis, 20, 21, 25, 28, 30, 34, 79 end-of-life care, 20, 21, 36, 79 health insurance, 20, 26–27, 28, 30–31, 33, 34, 55, 79 hospitals and hospitalization, 21, 25, 33, 79 medical charts and records, 20, 23, 26, 28, 32–33, 34 outcome measures, 22, 23, 25, 26, 27 pain control, 21, 36 patient satisfaction, 21, 25, 26, 29, 34 performance standards, 22, 27, 28–29, 36 privacy and confidentiality, 27, 32–33 process standards, 23, 26 quality-of-care measures, 21, 24–26, 34, 36, 79 radiation therapy, 23–24, 24, 25, 26, 27, 28, 31, 33 registries, 20, 28, 29, 34 stages of cancer, 19, 25, 26–27, 28, 33, 34 treatment, general, 20, 21, 27, 79 Centers for Disease Control and Prevention (CDC), 4, 6, 85, 87, 89, 90, 121 see also National Program of Cancer Registries Cervical and uterine cancer, 24, 41, 42, 49, 63, 85, 121 Cervical Cancer Early Detection Program, 121 Charts, see Medical charts and records Chemotherapy, 5, 12, 40, 41, 47, 48, 50, 81, 85, 112, 113, 134 case studies, 21, 22, 25, 26, 33 registries, 58 Clinical practice guidelines, 14, 80, 85, 90, 113–114, 133 case studies, 19, 20, 21, 22, 23, 27, 30, 34–35, 79

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117 Cohort studies, 13, 15, 58 Colorectal cancer, 39, 40, 47, 49, 70, 92 adjuvant therapies, 32, 33, 47, 79 case studies, 20, 24, 27, 31, 32–33 surgery, 33, 44, 70 Communications, 4, 14 Intranets, 6, 14, 53, 90 see also Internet Comorbidity, 3, 6, 9, 40, 45, 48, 119 case studies, 19, 27, 33 registries, 58, 92, 135, 136, 140 reporting standardized, 6, 12, 14, 19, 54–55, 77, 84, 85–86, 87, 90 secondary (metastatic) cancer, 12, 53, 117 Computer-based patient records, 2, 3, 4, 6, 10, 12, 13–14, 38, 52–53, 75, 77, 80–81, 90, 93 case studies, 19, 20, 22, 30, 79 Intranets, 6, 14, 53, 90 privacy and confidentiality, 4, 71, 73, 81, 93 Confidentiality, see Privacy and confidentiality Consent, see Informed consent Consumer Assessment of Health Plans Survey, 34 Cost factors, see Economic factors Cross-sectional studies, 3, 12, 42, 46, 77 D Demographic factors, 11, 33, 40, 57, 58, 59, 60, 118, 119, 120, 121 socioeconomic status, 15, 40 see also Age factors; Elderly persons; Geographic factors; Population-based studies; Race/ethnicity Demonstration projects, 6, 7, 94 see also Case studies Department of Health and Human Services, 5–6, 43, 49, 73, 74, 84, 86, 93 see also Agency for Healthcare Research and Quality; Centers for Disease Control and Prevention; Food and Drug Administration; Health Care Financing Administration; National Center for Health Statistics; National Institutes of Health Department of Veterans Affairs, 6, 7, 38, 84–85, 90, 92 Diabetes, 52, 63, 85 Diagnosis, 4–5, 8, 9, 12, 39, 70, 92, 110, 114–115, 121 biopsies, 25, 30, 47, 70, 112, 137 breast cancer, 12, 28, 30, 47, 50, 70, 112, 132–140; see also Mammography case studies, 20, 21, 25, 28, 30, 34, 79 cervical cancer, 121 recently diagnosed patients, 1–2, 9, 15, 31, 42, 46, 76, 118, 119, 135 registry data, 37–38, 40, 41, 42, 45, 92, 132–137 secondary cancer, 12, 53, 117 see also Stage of cancer Drug treatment, see Chemotherapy; Medication E Economic factors, 2, 43, 52, 115 costs of assessment, 19, 31, 59, 75, 80, 119, 127 costs of care, 19, 21, 25, 38, 39, 44, 116, 120, 126, 134 socioeconomic status, 15 see also Funding; Health Care Financing Administration; Health insurance Educational attainment, 121 Education and training funding, 23, 90, 119 patient, 49, 69, 71, 112, 116, 117 professional, 1, 22, 23, 52, 59,67, 90, 94, 110, 119 Elderly persons, 39, 69, 92, 111, 115, 120, 121–122, 125, 132, 135, 136, 139 Medicare, 32–33, 38, 39, 40, 43, 58, 69, 75, 87,91, 93, 115, 118, 120, 125, 133, 135 Electronic Communications Privacy Act, 73 Electronic patient records, see Computer-based patient records

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Employer-based health insurance, 31, 34, 66, 71, 115 HEDIS, 48, 66–68, 89 End-of-life care, 8, 12, 39, 44, 51, 80, 117 case studies, 20, 21, 36, 79 Ensuring Quality Cancer Care, 1, 8–10, 48, 71, 76, 83, 91, 109 Ethnicity, see Race/ethnicity Expert opinion, 13, 22, 23, 43, 81, 85, 90 peer review organizations (PROs), 27, 32, 69, 92, 125 F Federal government, 2, 6–7, 18, 43–44, 45, 49, 86, 89, 90–91, 94 clinical trials, 117 national data systems, 2, 11, 14–16, 77, 86–88, 94, 111, 119 privacy and confidentiality, 72, 74, 93 see also Department of Health and Human Services; Department of Veterans Affairs; Funding; Legislation Fee-for-service plans, 33, 37, 38, 39, 40, 119 Females, see Breast cancer; Cervical and uterine cancer; Gender factors Food and Drug Administration, 6, 90 Foundation for Accountability (FACCT), 26, 36, 83, 85 Freedom of Information Act, 72 Funding, 6–7, 18, 37, 43, 89, 119 education and training, 23, 90, 119 National Program of Cancer Registries, 6, 7, 57, 61, 87, 88, 92–93 peer review organizations, 92 registries, 42, 57, 59, 88, 89 G Gender factors, 33, 65, 132, 146 see also Breast cancer; Cervical and uterine cancer; Prostate cancer Geographic factors, 9, 11, 15, 16, 46, 57, 59, 61, 65, 66, 77, 81, 82, 93, 115, 125, 135, 146 rural areas, 59, 138 urban areas, 33, 65, 133, 138 H Healthcare Cost and Utilization Project, 44, 45 Health Care Financing Administration (HCFA), 6, 7, 63, 84–85, 88, 89, 92, 115, 125 case studies, 27, 32 linkage studies, 7, 38, 57 see also Medicaid; Medicare Health insurance, 5, 9, 55, 69, 71, 77, 84, 86, 93, 117, 120 accreditation, 5–6, 27, 48, 68–69, 84, 116, 125–126 case studies, 20, 26–27, 28, 30–31, 33, 34, 55, 79 computer-based patient records, 53 fee-for-service plans, 33, 37, 38, 39, 40, 119 registries, linkage to, 37–38, 40–42, 45, 57–65(passim), uninsured and underinsured persons, 11, 15, 120, 139 see also Employer-based health insurance; Managed care; Medicaid; Medicare Health Insurance Portability and Accountability Act, 73, 74, 93 Health maintenance organizations, 33, 37, 38, 39, 42–43, 67, 68, 126 Healthy People 2010, 56, 66 HEDIS (Health Plan Employer Data Information Set), 48, 66–68, 89 Hospice care, see End-of-life care Hospitals and hospitalization, 38, 44, 69, 125, 126 benchmarks, 9, 63 case studies, 21, 25, 33, 79 hospital-based data retrieval, 3, 5, 6, 89, 92, 133, 134, 138, 139, 140 registries, 20, 25, 34, 38, 56(n.5), 58, 60, 61, 65, 78, 79, 133, 134, 138, 139, 140 pain control, 21 see also Medical charts and records I IMSystem, 69, 70

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Independent Health Association, 30 Informed consent, 42, 45 Insurance, see Health insurance International Association of Cancer Registries, 62 Internet, 2, 27, 48 Agency for Health Research and Quality (AHRQ), 85 computer-based patient records, 53 Healthcare Cost and Utilization Project, 44 HEDIS, 67 Joint Commission for the Accreditation of Healthcare Organizations , 68 National Center for Health Statistics, 44 National Forum for Health Care Quality Measurement and Reporting, 52 Quality Compass, 68 Quality Interagency Coordination Task Force, 49 SEER, 93 Intranets, 6, 14, 53, 90 J Joint Commission for the Accreditation of Healthcare Organizations (JCAHO), 5–6, 33(n.1), L Legal issues, 124 informed consent, 42, 45 malpractice, 137 see also Privacy and confidentiality Legislation Cancer Registries Amendment Act, 57, 72 Electronic Communications Privacy Act, 73 Freedom of Information Act, 72 Health Insurance Portability and Accountability Act, 73, 74, 93 Privacy Act, 72 Linkage studies, 7, 37–39, 40–42, 45, 57–65 (passim), Health Care Financing Administration (HCFA), 7, 38, 57 health insurance, 37–38, 40–42, 45, 57-65 (passim), National Cancer Institute, 7, 34, 37–39 SEER, 7, 38–39, 41, 4–5, 57, 62–63, 87, 91, 92–93, 118 Local systems of care, 12, 16, 42, 46, 66–75, 92, 125 case studies, 20–22 see also Health insurance; Hospitals and hospitalization; Provider groups Lung cancer, 21, 39, 44, 47, 49, 70, 81, 85, 120, 135 M Males, see Gender factors; Prostate cancer Malpractice, 137 Mammography, 28, 21, 43, 47, 51, 62–63, 66, 111, 112, 137 Managed care, 40, 42–43, 45, 48–49, 68, 80–81, 119, 126 benchmarks, 9 case studies, 26, 30 geographic variation, 15 National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116 see also Health insurance; Health maintenance organizations Medicaid, 69, 115, 139 Medical charts and records, 3, 5, 12, 40, 54–55, 78, 79, 80, 92, 112 case studies, 20, 23, 26, 28, 32–33, 34 see also Computer-based patient records; Privacy and confidentiality Medical Expenditure Panel Survey, 43 Medicare, 32–33, 38, 39, 40, 43, 58, 69, 75, 87, 91, 93, 115, 118, 120, 125, 133, 135 Medication, 19, 23, 27, 40, 43, 63, 113, 120, 132, 133, 138, 140 see also Chemotherapy; Pain and pain control (palliative care) MEDSTAT, 69 Men, see Gender factors; Prostate cancer Minority groups, see Race/ethnicity

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Models and modeling, 6, 85 see also Case studies; Demonstration projects N National Ambulatory Medical Care Survey, 43 National Cancer Data Base (NCDB), 4, 6, 31, 55, 59–62 (passim), National Cancer Institute (NCI), 23, 42, 45, 48, 71, 75, 83, 84, 87, 89, 91, 117 educational efforts, 7, 23 demonstration projects, 7 funding, 6, 7, 59 linkage studies, 7, 34, 37–39 registries, general, 4, 38, 39, 40, 41, 92; see also Surveillance, Epidemiology, and End Results (SEER) program National Center for Health Statistics, 44, 59, 126 National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116 National Comprehensive Cancer Network (NCCN), 26, 27, 30, 35, 81, 84 National Coordinating Council for Cancer Surveillance, 62 National Death Index, 57 National Forum for Health Care Quality Measurement and Reporting, 49, 52, 86 National Health Interview Survey, 43 National Home and Hospice Care Survey, 44 National Hospital Discharge Survey, 44 National Institutes of Health, 6, 90 see also National Cancer Institute National Mortality Followback Survey, 44 National Program of Cancer Registries (NPCR), 4, 39, 55, 56-64(passim), funding, 6, 7, 57, 61, 87, 88, 92–93 Nationwide Inpatient Sample, 44 Native Americans, see American Indians North American Association of Central Cancer Registries, 56, 62, 146–147 O Organizational factors, 1, 15, 112, 127 accreditation of health care organizations, 5–6, 27, 33(n.1), 68–69, 84, 116, 125–126 provider practice management, 19, 22, 34, 79, 80 research consortiums, 37, 42–43, 45, 93, 114 Outcome measures, 2, 12, 14, 41, 44, 47, 48, 110, 112, 118, 119, 121 case studies, 22, 23, 25, 26, 27 computer-based patient records, 46 registries, 37, 58 see also Quality of life; Survival rates and durations Outpatient care, see Ambulatory care P Pain and pain control (palliative care), 2, 8, 12, 16, 44, 50, 51, 80, 110, 117 case studies, 21, 36 see also End-of-life care Patient attitudes and beliefs, general, 48, 121 see also Patient satisfaction Patient education, 49, 69, 71, 112, 116, 117 educational attainment of patients, 121 Patient records, see Computer-based patient records; Medical charts and records Patient satisfaction, 13, 40–41, 67, 71, 80, 110, 115–116, 119 breast cancer patients, 25, 29, 51 case studies, 21, 25, 26, 29, 34 end-of-life care, 21 see also Quality of life Patterns of care studies, 23–24, 81 Peer review organizations (PROs), 27, 32, 69, 92, 125 Performance standards, 1, 6, 48, 69, 78, 80, 85, 86, 94, 135

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care case studies, 22, 27, 28–29, 36 see also Benchmarks; Outcome measures Pharmaceuticals, see Medication Political factors, 1 Population-based studies, 3, 12, 14–16, 45, 46, 55–63, 77, 81–82, 87, 88, 126, 142–145 cohort studies, 13, 15, 58 mammography, 63, 66 workshop agenda, 123–124 see also Demographic factors; National Cancer Data Base; National Program of Cancer Registries; Registries; Surveillance, Epidemiology, and End Results (SEER) program Poverty, see Socioeconomic status President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, 49, 86, 114 Preventive Services Task Force, 13 Privacy Act, 72 Privacy and confidentiality, 3, 4, 7, 12, 45, 46, 71–75, 77, 94 case studies, 27, 32–33 computer-based records, 4, 71, 73, 81, 93 legislation, 72, 73, 74, 93 registries, 71–72, 73, 74, 93, 124 state government, 73, 74–75, 92 Process standards, 12, 13, 37, 46, 48, 66, 77, 80, 112, 118 case studies, 23, 26 see also Benchmarks Professional education and training, 1, 22, 23, 52, 59, 67, 90, 94, 110, 119 PROs,see Peer review organizations Prostate cancer, 24, 31, 39, 41, 42, 45, 47, 49, 60, 85, 113, 133, 136 surgery, 45, 85, 133 Provider groups, 9, 16, 19–23, 25, 34 Public opinion, 109, 110 Q Q-SPAN, 85 Quality Compass, 68 Quality Interagency Coordination Task Force, 49, 86 Quality-of-case measures, 2, 5, 40, 51, 61, 67, 77, 78, 83–86, 109, 111–118, 119–120, 124 adaptability, 3, 17 aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78 case studies, 21, 24–26, 34, 36, 79 core set, 5–6, 12–13, 36, 46, 47–52, 114–116 discrete populations, 16 lacking, 3, 19, 75, 80, 81, 83 risk-adjusted, 39 time-series analysis, 3, 13, 16, 23–24 workshop agenda, 123 see also Accountability;Benchmarks;Outcome measures;Performance standards;Process standards;Standards, general Quality of life, 25, 27, 29, 41, 44, 45, 111 see also End-of-life care R Race/ethnicity, 11, 24, 33, 59, 60, 65, 120, 121, 132, 133, 136, 140, 146 African Americans, 59, 136 American Indians, 59 language factors, 67 Radiation therapy, 5, 24, 26, 40, 119, 133 American College of Radiology, 20, 23–24 breast cancer, 25, 26, 27, 28, 31, 33, 47, 89, 112, 133, 134, 136, 139 case studies, 23–24, 24, 25, 26, 27, 28, 31, 33 RAND, 91 Records,see Computer-based patient records;Medical charts and records;Privacy and confidentiality Registries, 3, 5, 39–42, 61, 77, 78, 87–89, 91–92 administrative data and, 37–39 case studies, 20, 28, 29, 34 comorbidity, 58, 92, 135, 136, 140 computer-based patient records, 14, 53 diagnosis, 37–38, 40, 41, 42, 45, 92, 132–137 funding, 42, 57, 59, 88, 89

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care health insurance records and, 37–38, 40–42, 45, 57–65 (passim), hospital, 20, 25, 34, 38, 56(n.5), linkage efforts, 7, 37–39, 40–42, 45, 57–65 (passim), National Cancer Institute, general, 4, 38, 39, 40, 41, 92; see also Surveillance, Epidemiology, and End Results (SEER) program North American Association of Central Cancer Registries, 56, 62, 146–147 outcome measures, 37, 58 privacy and confidentiality, 71–72, 73, 74, 93, 124 special studies, 37, 39, 41–42, 45, 87, 91–92 stage of cancer, 37, 40, 45, 58, 84, 92, 136, 139 standards, general, 39, 57, 59, 64, 146–147 state government role, 5, 6, 20, 32–33, 39, 40–42, 45, 56–60, 64–65, 72, 74–75, 84, 88, 91–93 indicators of data quality, by state, 142–146 individual state studies, 132–140 survival rates, 58, 65, 139, 140 workshop agenda, 123–124 see also National Cancer Data Base; National Program of Cancer Registries Reporting requirements, 3, 6, 14, 15, 17, 53–55, 79, 112 aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78 comorbidity, standards, 6, 12, 14, 19, 54–55, 77, 84, 85–86, 87, 90 stage of cancer, standards, 3, 6, 12, 14, 19, 46, 53–54, 77, 84, 85–86, 90 standards, general, 3, 14, 39, 69, 75, 77, 79, 80 treatment, standards, 20, 46, 87 see also Computer-based patient records; Registries Risk factors, 39, 42, 43, 49 smoking, 42, 43, 63, 117 Rural areas, 59, 138 S Sampling, 15–16, 24, 41, 43, 44, 49, 83 Secondary (metastatic) cancer, 12, 53, 117 SEER, see Surveillance, Epidemiology, and End Results (SEER) program Skin cancer, 41, 49, 53, 60 Smoking, 42, 43, 63, 117 Socioeconomic status, 15, 40, 65, 77, 119, 132, 133, 134, 140, 146 Medicaid, 69, 115, 139 Special studies, 6, 37, 39, 41–42, 45, 87, 91–92 Stage of cancer, 12, 15, 42, 43, 44, 50, 70, 113, 119 case studies, 19, 25, 26–27, 28, 33, 34 recently diagnosed patients, 1–2, 9, 15, 31, 42, 46, 76, 118, 119, 135 registry data, 37, 40, 45, 58, 84, 92, 136, 139 reporting standardized, 3, 6, 12, 14, 19, 46, 53–54, 77, 84, 85–86, 90 secondary (metastatic) cancer, 12, 53, 117 Standards, general, 13, 18, 21, 43, 73, 110 accreditation of health care organizations, 5–6, 27, 33(n.1), accreditation of insurance organizations, 5–6, 27, 48, 68–69, 84, 116, 125–126 National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116 accreditation of providers, 23, 27, 67, 116, 125–126 computer-based records, 13–14, 80–81 quality of life, 25, 27, 29, 41, 44, 45, 111 registries, 39, 57, 59, 64, 146–147 see also Benchmarks; Clinical practice guidelines; Outcome measures; Performance standards; Process standards; Quality-of-care measures; Reporting requirements State government, 2, 4, 15, 16

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Medicaid, 69, 115 peer review organizations (PROs), 27, 32, 69, 92, 125 privacy and confidentiality, 73, 74–75, 92 registries, 5, 6, 20, 32–33, 39, 40–42, 45, 56–60, 64–65, 72, 74–75, 84, 88, 91–93 indicators of data quality, by state, 142–146 individual state studies, 132–140 see also National Cancer Data Base; National Program of Cancer Registries; Surveillance, Epidemiology, and End Results (SEER) program State Inpatient Database, 44 Statistical analyses, 13, 15, 49, 136 aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78 case-control studies, 13 clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117 cohort studies, 13, 15, 58 cross-sectional studies, 3, 12, 42, 46, 77 sampling, 15–16, 24, 41, 43, 44, 49, 83 time-series analysis, 3, 13, 16, 23–24 Supportive care, 9, 20, 43 Surgery, 44, 70, 113, 135, 142–143 breast cancer, 25, 26, 28, 30–31, 43, 44, 47, 50, 70, 81, 89, 112, 113, 132–140 colon cancer, 33, 44, 70 prostate cancer, 45, 85, 133 Surveillance, 118–119 see also National Cancer Data Base; National Program of Cancer Registries; Registries; Reporting requirements; Surveillance, Epidemiology, and End Results (SEER) program Surveillance, Epidemiology, and End Results (SEER) program, 4, 6, 45, 55, 59–65 (passim), linkage efforts, 7, 38–39, 41, 45, 57, 62–63, 87, 91, 92–93, 118 Survival rates and durations, 21, 23, 39, 40, 42, 55, 59, 111, 113, 119 breast cancer, 21, 26, 29, 139, 140 registries, 58, 65, 139, 140 Survivorship issues, 43, 44, 45, 116–117, 126 T Technological innovations (adaptability), 3, 5, 12, 17, 46, 78 see also Computer-based patient records; Internet; Intranets Telecommunications, 4 Intranets, 6, 14, 53, 90 see also Internet Time-series analysis, 3, 13, 16 Patterns of care studies, 23–24 Tobacco use, see Smoking Training, see Education and training Treatment, 4–5, 9, 12, 40, 43, 44, 58, 85, 110, 111, 113, 118 breast cancer, 12, 20, 39, 50, 79, 132, 133, 134 case studies, 20, 21, 27, 79 clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117 elderly persons, 121–122, 132, 135, 136, 139 provider groups, 20, 21 reporting standardized, 20, 46, 87 see also Adjuvant therapies; Chemotherapy; Medication; Pain and pain control (palliative care); Radiation therapy; Surgery U Uninsured and underinsured persons, 11, 15, 120, 139 Urban areas, 33, 65, 133, 138 V Veterans Affairs, see Department of Veterans Affairs W Women, see Breast cancer; Cervical and uterine cancer; Gender factors World Wide Web, see Internet