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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
