Index

A

Academic organizations, 64, 81, 98

Access control (to data), 3, 36, 37, 152, 153, 154-155, 162, 239

Access to health care, 61, 65, 70, 80

Account numbers, 52

Accuracy of data, 5-6, 7, 8, 11, 12-13, 31, 36, 50, 85-90 passim, 95, 107-108, 161, 239

Acquired immunodeficiency syndrome AIDS), 149

Administration on Aging, 64

Administration on Children and Families, 64

Administrative information, 3, 33, 44, 45, 54, 75-76, 88

data sets, 29, 54, 70, 87n

Adopted children, 75

Age and date of birth, 44, 51

Agency for Health Care Policy and Research (AHCPR), 43, 87n.

See also National Center for Health Services Research

Allergies, 46, 74

Alliances, see Networks and alliances (provider)

Ambulatory care, 30, 63, 73, 86, 99

American College of Surgeons National Trauma Registry, 68, 80

American Health Information Management Association, 34n

American National Standards Institute, 89

Americans with Disabilities Act (ADA), 79, 159

Analysis consultants, 115n

Analytic methods, 7, 8, 12-13, 36, 113

Ancillary facilities, 78

Antitrust issues, 31, 78, 111-112

Appropriate health services, 1, 62, 72, 88, 114

Artificial intelligence, 77

Assessment, see Comparative data;Needs assessment; Quality assessment; Technology assessments

Associations, see Business coalitions; Consumer interest groups; Professional associations

Attorneys, 37, 65, 82, 141, 207

B

Behavioral risks, 44, 80

Benefits, 76n.

See also Insurance coverage and terms

Benton International (BI), 59

Bill collectors, 65, 82

Billing, 59, 70, 76



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--> Index A Academic organizations, 64, 81, 98 Access control (to data), 3, 36, 37, 152, 153, 154-155, 162, 239 Access to health care, 61, 65, 70, 80 Account numbers, 52 Accuracy of data, 5-6, 7, 8, 11, 12-13, 31, 36, 50, 85-90 passim, 95, 107-108, 161, 239 Acquired immunodeficiency syndrome AIDS), 149 Administration on Aging, 64 Administration on Children and Families, 64 Administrative information, 3, 33, 44, 45, 54, 75-76, 88 data sets, 29, 54, 70, 87n Adopted children, 75 Age and date of birth, 44, 51 Agency for Health Care Policy and Research (AHCPR), 43, 87n. See also National Center for Health Services Research Allergies, 46, 74 Alliances, see Networks and alliances (provider) Ambulatory care, 30, 63, 73, 86, 99 American College of Surgeons National Trauma Registry, 68, 80 American Health Information Management Association, 34n American National Standards Institute, 89 Americans with Disabilities Act (ADA), 79, 159 Analysis consultants, 115n Analytic methods, 7, 8, 12-13, 36, 113 Ancillary facilities, 78 Antitrust issues, 31, 78, 111-112 Appropriate health services, 1, 62, 72, 88, 114 Artificial intelligence, 77 Assessment, see Comparative data;Needs assessment; Quality assessment; Technology assessments Associations, see Business coalitions; Consumer interest groups; Professional associations Attorneys, 37, 65, 82, 141, 207 B Behavioral risks, 44, 80 Benefits, 76n. See also Insurance coverage and terms Benton International (BI), 59 Bill collectors, 65, 82 Billing, 59, 70, 76

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-->   Biometric identifiers, 6, 51, 52, 165, 206 Blood banking, 80 Breast cancer, 79-80 Business coalitions, 6, 32, 35, 50, 60, 64 C California, 73-74, 96-97, 147, 149 Canadian provincial databases, 30, 62, 70 Cancer registries, 42, 79-80 Capitation payments and systems, 12, 30, 60, 106 Cardiac surgery, 71-72, 74, 79, 96, 123-135 Case management, 74-75, 76-77, 141 employer-based plans, 79, 159-160, 207, 208-209 Case-mix analyses, 46, 113, 127 CD-ROM releases, 104 Centers for Disease Control and Prevention, 64 Certainty, 127-129 Charges for services, 44, 70, 78, 91, 98 Charitable groups, 65, 81 Check digits, 166n Child abuse, 82, 141 Chronic illness, 74-75, 79 Claims, see Insurance claims Clearinghouses, 59, 62n Cleveland Health Quality Choice (CHQC), 67, 97, 103n, 109 Clinical evaluative sciences, 72-73 Clinical information, 3, 33, 50, 54, 62 limitations of, 31, 88 Clinical practice norms and guidelines, 62, 71, 78, 100 Clinton administration health plan, see Health Security Act Code of Fair Health Information Practices, 9, 20, 21, 190, 192, 196 , 197-198, 211 Code of Fair Information Practices, 176-178, 192 Cognitive functioning, 46 Commercial applications, 65, 82, 137-138, 141-142, 144-145, 210 Community-based information systems, 40n, 81. See also Health database organizations Community Health Management Information Systems (CHMISs), 34, 59-60, 64 Community health needs, see Needs assessment Community interest groups, 37, 64-65, 81 Comparative data, 13, 30, 73, 78, 92, 97, 108, 127-129 Competition and competitor information, 31, 37, 70, 78, 100 managed competition, 71, 73 Completeness of data, 5-6, 7, 8, 85-89, 90, 107-108 Comprehensiveness of databases, 3, 5, 33, 35, 36, 44-47, 48n, 49, 54, 61, 85, 89, 239 limitations to, 30-31, 46-47, 84 research projects, 31 Compulsory process, 9, 16, 20, 21, 151, 185, 186, 191, 193-194, 207 Computer-based media, 91, 104-105 public use data tapes, 30, 112, 114 Computer-based patient records (CPRs), 7, 30, 32, 41, 43, 50, 51, 83n, 241 development of, 88-89, 90 privacy issues, 141-142 Computer Matching and Privacy Protection Act, 178-179, 189-190 Computer systems, see Computer-based media; Computer-based patient records; Networks (data); System security Confidentiality, 3, 16, 29, 33, 36, 46, 83, 92, 147-155, 156-161, 239 and data release, 7, 8, 16-18, 110, 111, 112, 149-151, 157-161, 198 -199 protection measures, 4, 8, 114, 136, 151-152, 154-156, 157, 171 public education on, 9, 39, 195 See also Privacy Connectivity, 239 Consent, see Informed consent Construct validity, 243 Consultants, 98, 15n Consumer information, 71, 75, 81, 92, 93-94, 101, 115n, 129 guides, 96, 97-98 See also Public disclosure Consumer interest groups, 35, 37, 64-65, 81, 115, 211 Consumer reporting agencies, 172, 173-174 Control of databases, 50 Copayments, 44

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-->   Coronary artery bypass graft (CABG) surgery, 71-72, 74, 96, 123-135 Costs of databases, 31, 87 and education and outreach activities, 47, 106, 107 relation to expansiveness, 36 Costs of health care analyses and control of, 1, 2, 11, 32, 41, 61-62, 65, 70, 73 public disclosure, 11, 12, 91, 93-94, 98, 106 Counseling, 46 Court orders, 16, 150, 151, 193 Covert data acquisition, 160-161, 162 CPR Institute, 88, 89 Credit institutions, 65, 82, 138, 160 Current medical management, 45, 46  D Databases, 1-3, 4-5, 29-32, 42-43, 239 characteristics of, 5-6, 43-53 limitations of, 2, 30-31, 84, 85-86 national identification, 18, 163-165 See also Administrative information, data sets; Comprehensiveness of databases; Health database organizations; Inclusiveness of databases; Insurance claims; Medicare, administrative data files; Networks (data); Public use data tapes; Registries; Research databases; Statewide databases; Surveys and questionnaires; Uses of databases Data confidentiality, 148, 154-155, 156, 239 Data-exchange standards, 89, 239-240 for computer-based patient records, 43n obstacles to setting of, 31 Data integrity, 154-155, 200-201, 240 Data integrity boards, 189-190, 195, 200 Data linkage, 4-5, 32, 42, 49, 87n, 165-166, 200, 240 of computer-based patient records, 43n and multiple providers, 53, 167 and networks, 6, 53-54 See also Universal identifiers Data networks, see Networks (data); Regional data centers and networks Data protection units, 9-10, 21-22, 189-190, 194-201 Data reliability, 6, 36, 70, 85, 86, 240 of clinical information, 31 and public disclosure, 11, 92-93, 95, 98, 99, 101, 112 Data reuse, 42, 240 Data security, 14-15, 18, 139-140n, 152-153, 154-155, 156, 240 in HDOs, 21-22, 36, 189-190, 192n, 200-201, 210 Decisional privacy, 143 Deductibles, 44 Definitions of patient record data elements, 6, 31, 87, 89 Demographic characteristics, 44, 45 adjustments for, 2, 30, 113 Dentists, 12, 106 Department of Defense, 167 Department of Health and Human Services (DHHS), 43, 64, 139 Department of Veterans Affairs, 66 Diagnosis-related Group Prospective Payment System (DRG-based PPS), 72, 85-86 Diagnosis-specific analyses, 71, 85-86, 98 Diagnostic procedures, 46, 119, 153 Direct marketing firms, 65, 82, 138 Disadvantaged populations, 65, 70, 71, 81 Discharges, see Hospitals, discharge databases Disclosure, see Confidentiality; Informed consent; Privacy; Public disclosure; Redisclosure; Statistical disclosure limitation Disease incidence, 62, 65, 79 Disease registries, 41, 42, 79-80 DNA Identification Act, 138 DNA patterns, 6, 51 Dossiers, 144 in national identification systems, 18, 163-165 Drugs and medications, 46, 141-142 reactions and allergies to, 46, 74, 75 tracking of, 75, 146-147 Dual coverage, 44 Duty to warn, 151, 159 E Economics, see Costs of health care; Socioeconomic status Education, see Public education and outreach

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--> Effectiveness research, 72-73, 85, 87, 88, 114 Elderly population, 72 Electronic data interchange (EDI), 50, 76 Electronic Data Systems Corporation (EDS), 34n Electronic funds transfer (EFT), 142 Electronic transmission, see Electronic data interchange; Transmission of data Emergency information, 44 Emergency medical services, 30, 80 Emotional well-being, 46, 99 Employee agreements, 189 Employers information on, 44, 54, 99 self-insured health plans, 37, 64, 75, 78-79, 152, 159-160 use of person-identifiable data, 10, 24 25, 79n, 139n, 140, 159-160, 207, 208-209, 210-211 Employment Retirement Income Security  Act (ERISA), 17-18, 78-79n. 152 Employment status, 44 Encounter forms, 30, 31, 42, 46 End results, see Outcomes of care End-stage renal disease (ESRD) data  systems, 74 Epidemiological data and applications, 36,  41, 72, 77, 79-80, 81, 99, 170 Equifax, see Harris/Equifax survey Error control, 166 ESRD Program Management and Medical  Information System, 74 Ethnic groups, see Race and ethnicity Evaluative studies, 8, 71-74 public disclosure of, 4, 11, 12-14, 91 92, 95, 98, 101-103, 105, 106-107, 108-110, 114-116, 122, 123, 127-129 retraction and correction of. 115-116 staff capabilities, 114-115 Exclusive provider organization (EPO) arrangements , 79 Executive Order 12356, 191-192 Expenditures, see Costs of databases;Costs of health care F Fair Credit Reporting Act (FCRA), 138, 173-174 Fairness doctrine, 13, 109-110, 178 Fairness issues, 2, 11, 31-32, 39, 92-93, 121, 123, 127-129 See also Code of Fair Health Information Practices; Code of Fair Information Practices; Potential for harm Family medical history, 44, 46, 74-75, 140 of adopted children, 75 Family members, 44, 74-75, 159-160 Feedback from providers, 13, 110 to providers, 14, 80, 116-117, 121, 240 Financial institutions, 65, 82, 138 Fingerprints, 6, 51, 52 Food and Drug Administration, 64 Fraud, 82, 141 Freedom of Information Act (FOIA), 101, 111n, 120-121, 148, 175-176 Free-standing surgery centers, 63 Fund-raising campaigns, 81 G Gender, 44, 65 Generalizability, 101, 102, 240 General releases, 183-184 Genetic information, 44, 75, 82, 140 privacy issues, 138, 149, 158-159 Geographic variation, 65, 70, 77 Germany, 164 Global index, 101, 102-103, 240 Good information practices, 192-193 Government employees, 75 Group practices, 106 H Harm, see Potential for harm Harris/Equifax survey, 137, 156, 159, 164, 171-172, 211 Hartford, John A., Foundation, 33-34, 59-60, 62n Health Care Financing Administration (HCFA), 43, 51, 53, 64, 70, 74 hospital mortality studies, 71-72, 96-98, 109 Health Care Policy Corporation, 50 Health care purchasing coalitions, 60, 64 Health care reform, 2, 32, 50, 61, 62, 65, 87, 88 and antitrust rules, 31

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--> and insurance benefits, 76n and quality assessment, 71 See also Health Security Act Health database organizations (HDOs), 1, 29, 35-37, 41, 54-60, 89 -90 data protection units, 9-10, 21-22, 189-190, 194-201 definition of, 3, 32-33, 54-55, 240 governance of, 3, 33, 35, 50, 54, 55, 95-96, 156, 186-189, 196-197 legal status, 172-179, 188-189 privacy and confidentiality issues, 9-10, 20-26, 36, 145-146, 151, 154-156, 161, 162-163, 170-210 quality assurance, 6-7, 85-89, 90, 95 See also Evaluative studies; Public disclosure; Research applications; Uses of databases Health Information System Standards (proposed), 139n Health Information Technologies, Inc., 142 Health maintenance organizations (HMOs), 12, 30, 47, 52, 53, 60, 63, 98, 106 Health Pages, 97 Health promotion, see Public education and outreach Health Reform Task Force on Privacy and  Security of Health Care Information, 139 Health risk factors, 44, 45, 74, 140-141 Health Security Act (HSA), 3, 25, 34n, 40n, 92n, 139-140n Health Services and Resources Administration, 64 Health status, 2, 3, 30, 33, 45, 46, 47, 54,  60, 99, 140, 154, 240 -241 Heart surgery, see Cardiac surgery Henry Ford Health System, 57-58 High-technology therapies, 79 Hippocratic Oath, 148 Home health agencies, 53, 63, 78, 99 Homeless population, 81 Hospital Consortium of Greater Rochester (HCGR), 56-57 Hospitals, 30, 52, 63, 78, 94 admissions, 46, 51 discharge databases, 29-30, 42, 50, 51, 73-74 mortality rate studies, 71-72, 96-98 quality assessments, 12, 96-98, 105, 106 Human Genome Privacy Act, 138 Human immunodeficiency virus (HIV), 149 I Identification, see Biometric identifiers; National identification system or dossier; Personal identification codes; Person-identifiable information; Person-identified information; Unique identifiers; Universal identifiers Illegal data acquisition, 160-161, 162 Illinois, 79 Immunization records, 74, 80 Inadvertent release, 157 Inappropriate health services, see Appropriate health services Inclusiveness of databases, 3, 5, 33, 36, 47-49, 50, 52, 54, 61, 84, 89, 241 Independent practice associations (IPAs), 52, 63, 98 Industrial health and safety, 99 Informational privacy, 15, 29, 143-147, 155-156, 242 Information brokers, 160-161 Information-use policy, 155-156 Informed consent, 10, 17, 23-24, 139-140n, 148, 150, 152, 158, 173 182-186, 202-203, 206 Injuries, see Trauma Insider threat, 160, 189 Institute for Health Care Assessment, 62n Institutional Review Boards, 10, 24, 114, 115n, 202, 205 Insurance claims, 30, 32, 41, 43, 44, 51, 54, 60 automated processing, 2, 59, 75-76, 139, 141-142, 202 limitations as data source, 30, 31, 47, 86, 171 privacy issues, 139, 141-142, 150, 158, 161, 174 Insurance coverage and terms, 65, 70, 75, 76, 77 documentation in patient records, 44, 154 public knowledge, 93n Insurance premiums, 30, 77 Insurance support organizations, 172-173 Insurers, 31, 37, 50, 63, 64, 70, 77, 92 identifiers, 52, 89

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--> and quality assessment, 71, 73 See also Insurance claims; Insurance coverage and terms; Insurance premiums; Third-party payers Integrated Medical Systems, Inc., 69 Integrity, see Data integrity Intelligent adjudication, 76-77 Interactive access, 33, 55 Internal Revenue Service (IRS), 167, 168, 192, 193 Internal validity, 243 Interpersonal performance, 62 Invasive procedures. 70, 119 Iowa, 50 K Kaiser Permanente, 98 L Laboratories and laboratory testing, 46, 63 Law enforcement agencies, 37, 65, 82, 141, 185, 186, 193, 194, 207 Laws, see Legislation and statutes Lawyers, see Attorneys Legal guardians, 10, 23, 202, 204 Legal cases, 141 improper disclosure, 149, 152, 157, 196, 213 libel lawsuits, 109, 115-116 malpractice lawsuits, 37, 71, 82, 141 privacy rights, 146-147, 148, 175, 191 Legislation and statutes, 19, 37, 50, 106 insurance regulation, 78-79n preemptive, 9, 20-21, 111n, 152, 180-182, 190-194 on privacy and confidentiality, 9, 136, 138-140, 144, 146-147, 148, 149, 151-152, 155, 159, 168, 172-179, 180-182, 190-194, 212-213 of states, 6, 32, 35, 37, 50, 51, 60, 79n, 107, 140, 147, 182 Legislative charters, 175 Level of aggregation, 101, 106 Libel and defamation lawsuits, 109, 115-116 Lifestyle, 44, 140, 153 Linkage, see Data linkage Local areas, 97-98 Logic programs, 76-77 Longitudinal records, 2, 30, 49, 52, 241 M Malpractice suits, 37, 71, 82, 141 Managed care, 63, 64, 75, 76-77, 100, 141 See also Health maintenance organizations; Independent practice associations; Preferred provider organizations Managed competition, 71, 73 Mandatory reporting requirements, 16, 150-151, 159, 193-194 Manitoba Provincial Health Database, 67 Manual abstraction of records, 7, 31, 88 Marital status, 44, 154 Market research, 73, 77-78, 82, 98 Massachusetts Health Data Consortium, 50, 97 Maternal and Child Health block grants, 64 Medco Containment Services, 142 Medicaid, 29, 43, 52, 149 Medical devices, 82, 99 Medical histories, 2, 32, 45, 46, 74-75, 153 of adopted children, 75 family, 44, 46, 74-75, 140 Medical Information Bureau, 152, 158 Medicare administrative data files, 29, 42, 43, 51, 70, 72, 74, 96 assignment of identifiers, 52, 53, 167-168 Beneficiary Health Status Registry, 69 confidentiality regulations, 149 Current Beneficiary Survey, 51 Diagnosis-related Group Prospective Payment System, 72, 85-86 National Claims History, 29, 69 peer review organizations (PROs), 117n, 119n, 120-121 Medication, see Drugs and medications Memphis Business Group on Health, 60 Mental health status, 46 Merck & Company, 142 Metropolitan areas, 55, 97-98 Minnesota Clinical Comparison and Assessment Project, 67 Minorities, see Race and ethnicity Missing and miscoded data, 46-47, 49, 50, 86, 161 Missouri, 98 Misuse of information, 39, 51, 108, 112, 158 by employers, 79, 159, 208-209 providers' concerns, 3, 33, 120

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-->   Mortality rate studies, 71-72, 96-98 Multivariate analyses, 8, 12, 113, 127 N National Association of Health Data Organizations, 43 National Association of Insurance Commissioners (NAIC) Information and Privacy Protection Model Act (NAIC Model Act), 172-173 National Center for Health Services Research, 72 See also Agency for Health Care Policy and Research National Center for Health Statistics (NCHS), 43, 84 National Committee on Quality Assurance, 98 National Health and Nutrition Examination Survey, 30 National Health Board (proposed), 40n, 139-140n National Health Care Survey, 84 National identification system or dossier, 18, 163-165 National information infrastructure, 88-89 National Institute of Diabetes and Digestive and Kidney Diseases, 74 National Medical Expenditures Surveys, 30, 43 National Quality Management Council (proposed), 92n National Trauma Registry of the American College of Surgeons, 68, 80 Needs assessment, 1, 2, 31, 32, 41, 65, 70, 80-81 Networks and alliances (provider), 6, 71, 78, 79, 92n, 119 Networks (data), 32, 53-54, 153, 155-156, 163, 200-201, 241 See also Health database organizations; Regional data centers and networks Newsletters, 91 News media, 91, 96, 101, 115 New York Cardiac Surgery Reporting System, 68, 71, 96, 123-135 Single-Payer Demonstration Program, 58 Statewide Planning and Research Cooperative System (SPARCS), 30, 51 Notification procedures, 183 Nurses, 12, 99, 106 Nursing homes, 63, 98 O Observational data, 84 Office of Technology Assessment (OTA), 94 Orange County, California, 97 Organ and tissue banking, 80, 97 Outcomes of care, 2, 45, 46, 54, 62, 71-73, 79 data limitations, 31, 41, 47 definition, 241 prediction of, 92, 127-129 Out-of-area care, 24, 46-47, 204 Out-of-range values, 86 Outpatient care, 30, 63, 73, 86, 99 Outreach, see Public education and outreach P Paper-based medical records, 31, 42, 42n, 88 Parents, 10, 23, 202, 204 Participation rights, 184 Patient Outcome Research Teams (PORTs), 43, 72 Patient records, 30, 60, 76 commercial uses, 141-142, 210 data elements in, 44-46, 85-86 longitudinal, 2, 30, 49, 52, 241 primary, 42, 42n, 55, 140-141, 171, 241 privacy and confidentiality issues, 140-142, 145-152, 153-154, 156 -161, 199-200 redisclosure, 17, 151-152, 156, 158-160, 171-172, 196, 198-199 secondary, 5, 37, 42, 42n, 141, 241 See also Computer-based patient records Payers, see Third-party payers Peer review, 108, 119-121, 122 Peer review organizations (PROs), Medicare programs, 117n, 119n, 120-121 Pennsylvania Health Care Cost Containment Council (PHCCCC), 71-72, 96, 105n Personal identification (ID) codes (PICs), 19, 52, 59, 164, 165-170, 242 Person-identifiable information, 3, 6, 14-15, 33n, 39, 51-52, 136, 241-242

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--> employer use of, 10, 24-25, 79n, 139n, 140, 159-160, 207, 208-209, 210-211 in HDO files, 3, 5, 20, 33, 36, 54, 65, 89, 185-186 protection of, 9-10, 20, 114, 139-140n, 175-179, 190-201 Person-identified information, 3, 6, 33n, 51, 136, 242 commercial uses, 82, 137-138, 141-142, 144-145, 210 in HDO files, 5, 10, 23-25, 33, 36, 54, 185, 201-208 Personnel actions, 79 Pharmacies, 52, 63, 99 identifiers, 53 Physical functioning, 46, 99 Physician Payment Review Commission (PPRC), 48 Physicians, 36, 63, 74, 98, 118-119 and confidentiality, 148-149, 151, 159 consumer information on, 75, 94, 98-99, 100, 105, 106 identifiers, 52-53 quality assessment, 12, 71, 94, 98-99, 100, 105, 119-120 Planning applications, 2, 32, 37, 61, 62, 65, 71, 80-81 long-range strategic, 73, 77-78 patient care, 74-75 Podiatry, 12, 106 Point-of-service transactions, 59 Policy analysis, 30, 70 Populations, see Demographic characteristics;Disadvantaged populations; Inclusiveness of databases Postmarketing surveillance, 64 Potential for harm, 2, 31-32, 36, 39, 90, 156-161 of common disclosures, 157-160 of covert and illegal data acquisition, 160-161, 162 of data inaccuracies, 50, 86, 95, 161 of public disclosure, 8, 11-12, 13, 100, 105, 108-110, 121, 122 Practitioners, 8, 12, 30, 36, 44, 63, 78, 118-119 and data release, 10, 23, 24, 202, 206 duty to warn, 151, 159 identifiers, 52 and public disclosure, 37, 99, 100, 105, 106 Precertification, 76-77, 141 Preemptive legislation and confidentiality, 9, 20-21, 152, 180-182, 190-194 and FOIA, 111n Preferred provider organizations (PPOs), 63, 98 identifiers, 52-53 Pregnancy, 46, 65 Prescriptions and prescription drugs, 46, 141-142 tracking of, 75, 146-147 Preventive care, 80 Price regulation, 73 Primary care, 30, 99 Primary patient records, 42, 42n, 55, 140-141, 171, 241 PrimeTime Live, 104 Privacy, 3, 15, 18-19, 33, 39, 46, 92, 136-138, 142-143, 154, 162-172, 210-213, 242 ethical issues, 148-149, 210-212 informational, 15, 29, 143-147, 155-156, 242 institutional safeguards, 36, 83, 139-140n, 162-163, 165-167, 176-180, 189-190, 194-208 legislation on, 9, 136, 138-140, 144, 146-147, 148, 149, 151-152, 155, 159, 168, 172-179, 180-182, 190-194, 212-213 opinion surveys, 137, 156, 159, 164, 171-172, 211 and research uses, 10, 23, 24, 114, 170-172, 202, 205-206 right of, 15-16, 143, 145-147 See also Confidentiality Privacy Act of 1974, 15, 136, 144, 168, 176, 177-179, 197 Privacy Protection Study Commission (PPSC), 136-137, 142, 178 Private sector databases, 6, 12, 32, 35, 50, 106-107, 187-188 Social Security number use, 168-169 See also Competition and competitor information Privileging, 118-119 Product safety litigation, 82 Professional associations, 35, 107 Professional Standards Review Organizations (PSROs), 119n, 120

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--> Proprietary information, 31, 107 Prospective Payment System, 72, 85-86 Prostatectomy, 72-73 Providers, 63 competition issues, 31, 37, 100 concerns about HDOs, 31, 33, 35, 37, 92-93 and confidentiality, 148-151 data on, 36, 37, 44 harm from public disclosure, 11-12, 13, 100, 105, 108-110, 120, 122 identifiers, 52, 89 quality assessment, 12, 71, 73-74, 103-104, 106-107, 116-121 staff management, 73, 74, 79 strategic planning, 78 Public disclosure, 3, 4, 8-9, 20-24, 37, 38-39, 89, 90, 91-129, 240 advocacy of, 8-9, 110-113 content and format, 91, 103-105 methodological and technical issues, 8, 12-13, 93, 101-103, 104, 105, 107-108, 113, 122, 123, 127-129 and population subgroups, 37 potential for harm, 8, 11-12, 13, 100, 105, 108-110, 121, 122 prerelease review, 8, 11, 13, 109-110, 122 and providers, 8, 11, 37, 91-107 passim, 116-121 topics, 96-98, 121 Public education and outreach, 11, 39, 74, 75, 80, 81, 83-84, 95, 129, 195 Public health agencies and programs, 9, 64, 80-81, 148, 191 Public Health Service (PHS), 43, 64 Public use data tapes, 30, 112, 114 Q Quality assessment, 1, 2, 32, 41, 61, 62, 71, 74, 88, 242 comparative data, 13, 30, 73, 78, 92, 97, 108, 127-129 mortality rate studies, 71-72, 96-98 public disclosure of, 12, 91-92, 93, 94, 98, 106-107 Quality assurance and quality improvement (QA/QI), 71, 242 and HDOs, 12, 14, 36, 61, 73-74, 95, 105, 113, 116-118, 121-122 Quality of data, 6-7, 36, 84, 85-89, 90 and public disclosure, 92-93, 95, 98, 101, 107-108 Quality of life, see Health status Questionnaires, see Surveys and questionnaires  R Race and ethnicity, 37, 65 RAND Health Insurance Experiment, 30, 43, 93n, 127n Random error, 86n Randomized trials, 72 Recordkeeping privacy, 144-145 Redisclosure, 17, 151-152, 156, 158-160, 171-172, 196, 198-199 Reform, see Health care reform;Health Security Act Regional data centers and networks, 6, 34-35, 39, 138 in Clinton health plan, 40n See also Health database organizations Registries, 41, 42, 68, 79-80, 164 Regulation, 37, 97, 98, 190 on confidentiality, 149, 172 of insurance, 78-79n and quality assessment, 71, 73 See also Health care reform Release of data, see Access control;Public disclosure Reliability, see Data reliability Report cards, 98, 104 Repositories, 6, 29, 32, 59-60. See also Health database organizations Research applications, 2, 30, 36, 37, 55, 60, 64, 65, 70 and database comprehensiveness, 46, 47 effectiveness and outcomes, 72-73, 85, 87, 88, 114 mortality rate studies, 71-72 privacy issues, 10, 23, 24, 114, 170-172, 202, 205-206 quality of care, 73-74 Research databases, 30, 31, 42, 43 See also RAND Health Insurance Experiment; Surveys and questionnaires Residential facilities, 52 Retinal prints, 6, 51, 52

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--> Reuse, see Data reuse Risk adjustment, 2, 13, 113, 127 Rochester Area Hospital Corporation (RAHC), 56-57 Rochester Healthcare Information (RHI) Group, 56, 57 S St. Louis metropolitan area, 97-98 Sampling frames, 72 Satisfaction with services, 3, 33, 46, 47, 54, 60, 96n, 97-98 Science Applications International Corporation, 34n Scorecards, see Report cards Screening procedures, 46, 74 Secondary patient records, 5, 37, 42, 42n, 141, 241 Secondary use, 158-160, 171 Security, see Data security;System security Selective contracting, 77, 78, 79, 119 Self-insured health plans, 37, 64, 75, 78-79, 152, 159-160 Severity adjustment, 2, 46, 113 Sexual preference, 154 Side effects, 46 Small-area variations, 65, 70 Social functioning, 46, 99 Social Security numbers (SSN), 19, 25, 52, 165, 167-170, 209 Social service agencies, 65, 80, 141 Socioeconomic status, 37, 44, 65 Southeast Organ Procurement Foundation, 74 Soviet Union, 164 Staff management, 73, 74, 79 Standards and standardization of coding and definitions, 6, 7, 31, 76, 87, 89 data exchange, 31, 43n, 89, 239-240 obstacles to, 31, 76 privacy safeguards, 21, 139-140n State laws, 6, 32, 35, 37, 50, 51, 60, 79n, 107, 182 privacy, 17, 140, 147, 149, 151, 152, 159, 186-189, 191 Statewide databases. 29-30, 32, 35, 43, 50, 55, 70, 80-81 and mortality rate studies, 71-72 public disclosure, 96-97, 98 Statistical disclosure limitation, 101-102n, 171 Stigmatization, 157, 161, 162 Strategic planning, 73, 77-78 Substance abuse, 82, 149 Surgical procedures, 46, 71-74, 79, 96, 98, 99, 119, 123-135 Surveys and questionnaires, 41, 51, 60, 97-98, 171 national, 30, 42, 43, 47, 84 on privacy concerns, 137, 156, 159, 164, 171-172, 211 Sweden, 164 Symbolic data presentation, 104, 105 Systematic error, 86n System security, 153, 154-155, 242-243 of HDOs, 22, 36, 189, 200-201 T Task Force on Privacy, 139 Tax Reform Act, 168, 192 Technology assessments, 32, 62, 72-73n Telecommunications, and privacy, 138, 152, 157, 200-201 Telephone Consumer Protection Act, 138 Terminology, 31, 89 Therapeutic procedures, 46, 119, 153 Therapists, 99 Third-party administrators (TPAs), 37, 64, 76, 77, 159, 243 Third-party payers (TPPs), 64, 70, 77, 141, 243 precertification programs, 76-77, 141 See also Insurance claims; Insurance premiums; Insurers Timeliness of data, 33, 49-50, 54, 62 limitations of databases, 31, 84 in public release, 3, 8, 11, 12, 91, 92, 106, 118 Training programs, 64 Transaction systems, 59, 60 Transmission of data, 59, 76 medical histories, 2, 32 privacy issues, 137-138, 141, 142, 151-152, 157, 200-201 standardization, 31, 89 See also Networks (data) Transplantation, 79, 80 Transportation barriers, 65 Trauma identification of victims, 52 registries, 42, 68, 79-80

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--> U Underuse of health care, 48, 62, 79-80 Uniform Health Care Information Act, 149, 203 Unique identifiers, 25, 49, 52, 139n, 164-165, 209, 243 for providers, 52-53 See also Universal identifiers United Network for Organ Sharing, 74 United States Renal Data System, 74 Universal identifiers, 25, 52, 53, 164-165, 209, 243 Unnecessary health services, 62 Updating of data, 50, 54 U.S. Congress, 138-139 Uses of databases, 3, 4, 29, 32, 41, 61-65, 70-84 limitations on, 30-31, 84, 107-108 U.S. News & World Report, 97 Utilization management, see Case management Utilization patterns, 30, 54, 65, 70, 98 V Validity, 6, 31, 70, 85, 86, 87-88, 90, 243 of analytic techniques, 7, 8, 36, 113 and public disclosure, 11, 92-93, 95, 98, 99, 101, 108, 112, 113 Vermont Health Care Authority (VHCA), 58-59, 60 Voluntary database participation, 6, 60 W Wallet incident, 170 Washington Checkbook, 97 Washingtonian, 97 Washington State, 50, 60, 79, 185n Wisconsin, 97 Work Group on Computerization of Patient Records, 89 Workgroup on Electronic Data Interchange (WEDI), 76, 139, 181-182 Workplace health and safety, 80, 99