Health Data in the Information Age: Use, Disclosure, and Privacy (1994)

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

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

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

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

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

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

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

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

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

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

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