[Page numbers followed by b, f, or t refer to boxed text, figures, or tables, respectively.]
A
Access and utilization
in adolescent pregnancy, 45
in conceptual framework of children’s health, 61–62, 63f
as determinant of health status, 37–41
goals for health monitoring system, 13, 65, 94
language proficiency and, 31
longitudinal research, 200
measurement of disparities in, 58, 194
preventive and well-child care, 40b, 41b
in public health insurance programs, 137–138
racial and ethnic differences in, 114
Accessibility of data, 2, 19, 124, 126–127b, 176
Accidents. See Unintentional injury
Accountability
for community health, 52
data needs for, 151
in development of new health measures, 190
for health of underserved populations, 151
for implementation of recommendations, 7
measurement challenges, 141
purpose of quality measurement, 139
Accountable care organizations, 147
Add Health. See National Longitudinal Study of Adolescent Health
Administrative records, 69, 71, 74, 76, 251, 289–325
Adult health status
childhood determinants of, 28, 29, 38–39, 40–41, 42, 43–44
life-course perspective, 42
Adverse Childhood Experiences, 123–124
Affordable Care Act, 10–11, 38, 197, 198, 248
Agency for Healthcare Research and Quality, 18, 55–56, 64, 73, 97, 143
assessment of preventive services by, 197
in implementation of recommendations, 187b, 193, 199, 200, 203, 204–205, 207
Patient Safety Indicators, 320
quality improvement efforts, 149–151, 154, 158–160t, 247
work on quality indicators, 34b, 35b, 146, 195–196, 257
American Academy of Pediatrics, 57, 113–114, 164
American Community Survey, 88, 125, 167–168
American Recovery and Reinvestment Act, 77, 145, 149, 261
America’s Uninsured Crisis: Consequences for Health and Health Care, 37
Annie E. Casey Foundation, 129
Annual reports
current health monitoring system, 137, 143, 149, 191, 324
recommendations for, 6, 8, 9, 188, 191, 193
stepwise approach to data system improvement, 6, 183–184
Annual Social and Economic Supplement, 78
Anxiety disorders, 104
Assuring Better Child Health and Development, 165, 322–323
Asthma, 34, 35, 37, 39, 47, 58–59, 100, 104, 105, 114, 136
Attention-deficit/hyperactivity disorder, 41b, 100, 156
B
Behavioral disorders, 104, 157, 196–197
Behavioral health
current data collection, 105–106, 107, 123
life-course perspective, 45–46
online data collection, 126b
parent’s knowledge of child’s, 59
recommendations for measurement, 11, 198–199, 201
See also Substance abuse
Behavioral Risk Factor Surveillance Study, 123, 125, 126b
Benchmarking, 56, 75, 148, 151, 161, 289, 290
Beyond the HIPAA Privacy Rule, 84
Breastfeeding, 45
C
Capacity to use and report data
recent efforts to improve quality measurement, 161–162
recommendations for improving, 6, 11, 12–14, 199, 201, 205–207
stepwise approach to data system improvement, 6, 183, 184
technical support from federal agencies, 35b
Care transitions
chronic disorders, 163
life-course perspective for monitoring, 162, 173
longitudinal studies of, 202
measuring disparities in, 194
monitoring across multiple domains, 164–165
prenatal to pediatric, 162–163
rationale for monitoring, 4, 179
Centers for Disease Control and Prevention, 35b, 47, 85, 97, 104–105, 106, 107, 199, 203, 251
Centers for Medicare and Medicaid Services, 18, 148, 161–162
assessment of preventive services by, 197
in implementation of recommendations, 187b, 193, 199, 200, 203, 204–205
quality of care measurement, 34b, 35b, 135–136, 143, 146, 149, 151–154, 248, 301–302
in state data collection efforts, 161–162
Centers of Excellence, 150–151, 174
Child and Adolescent Health Measurement Initiative, 142, 165, 247, 294–295
Child Health Improvement through Computer Automation, 169
Child Poverty in Perspective: An Overview of Child Well-Being in Rich Countries, 14, 16
Children’s Health, the Nation’s Wealth, 26, 61, 72, 76, 95, 107, 108, 111, 122, 141, 165, 179, 184, 206
Children’s Health Insurance Program, 16, 183
Annual Reporting Template System, 324
coverage, 32b
data needs, 53
data sets, 31, 117–118, 252, 253, 254, 260, 291–292
definition of child, 75
efforts to standardize data, 162
funding, 32b
origins, 143
purpose, 32b
quality of care measurement, 137, 143, 145–146, 151–153
resource allocation, 32b
See also Public health insurance programs
Children’s Health Insurance Program Reauthorization Act, 2, 9, 17, 32b, 34b, 35b, 76–77, 93, 137, 143, 145–146, 149, 151, 248, 252, 253
Children’s Optimal Health, 171–172
Child Well-Being Index, 190
Chronic disease conditions
benefits of early intervention, 37
care transitions, 163
functional status measurement, 35–36, 108, 199
quality of care assessments, 246–247
See also Special health care needs, children with
Clean water supply, 41b
Clinical Immunization Safety Assessment Network, 318–319
Commonwealth Fund, 144
Community Health Data Initiative, 89
Consumer Assessment of Healthcare Providers and Systems, 75, 143, 150, 192, 260
Consumer Assessment of Health Plans, 292–293
Continuous improvement, 10, 16, 195, 196
Costs
of data collection, 71
health care financing, 147
health insurance coverage, 38
hospital data, 97
of low health literacy, 60b
in quality of care measurement, 137–138, 141
rationale for early intervention with complex health conditions, 135
special health care needs, 100
of standardization of data collection, 77
of unintentional injuries, 36
County Health Rankings, 129, 130, 131f
CPONDER, 126b
Criminal behavior, 46
Crossing the Quality Chasm, 33, 141, 144, 245–246
Current Population Survey, 78, 88, 125, 127b, 167–168
Cystic fibrosis, 33
D
DATA2010, 126b
Data collection
for accountability, 151
conceptual framework for, 27f, 59–63, 63f, 65, 205
criteria for developing high-quality systems, 53–54
cross-cultural validity, 192
emerging technologies for, 184–185
future prospects, 76–77, 84, 198
illustrative examples of challenges in, 85–88
rationale for improving, 53, 65
stakeholder interests and, 52
terminology, 24b
transparency in, 5, 11, 12, 124, 161, 180, 202–204
unique identifiers in, 11, 187b, 202, 204, 252
See also Data sources; Existing data and data systems; Measures of health and health care; Quality of care measurement
Data Resource Center for Child and Adolescent Health, 126b
Data sources
medical records, 248
needs of health care system, 50–51
recommendations for improving capacity to use, 6, 11, 12–14, 199, 201, 205–207
recommendations for new, 10–11, 196–200
See also Data collection; Existing data and data systems; Federal data collection and reporting systems; Integration of data sources
Data systems, 24b
Defense Medical Surveillance System, 309–310
Demographic data
current data collection system, 4, 178, 260
disparities in health and health care and, 31
goals for health and health care data collection, 94
reference group criteria, 179–180
significance of, in health care research, 92
smoking risk, 36
standardization issues, 136
See also Educational achievement and attainment; Language spoken at home and parental language proficiency; Race/ethnicity
Department of Veterans Affairs, 316–317
Diabetes, 40
Difficult-to-measure indicators, 1–2, 13, 154
Difficult-to-reach populations, 1–2, 13, 154
Directory of Health and Human Services Data Resources, 72
See also Special health care needs, children with
Disability in America: Toward a National Agenda for Prevention, 28
Disparities in health and health care delivery
case mix adjustment to study, 81–82
data sources, 33, 113–114, 115–116
infant health, 39
measurement challenges, 191
need for standardized measurement of, 8–9, 176, 191–192
oral health, 115
in public health insurance programs, 138
race/ethnicity and, 31, 34, 58, 92, 113–115
recommendations for measurement of, 8–9, 193, 194
shortcomings of current data collection, 3, 57–58, 77–79, 113–118, 176, 192
sociodemographic patterns and, 31
socioeconomic status as source of, 17, 31, 58, 78
Donabedian model, 49, 61, 245–246
E
Early Periodic Screening, Diagnosis, and Treatment, 186b, 197
Eating disorders, 45
Educational achievement and attainment current data collection system, 4, 178
health effects on, 39
health insurance and, 37
health outcomes of, 46
in measurement of social determinants of health, 199
parental, 117
Electronic data capture, 5, 182
Electronic health information exchange, 76, 84
Electronic health records
confidentiality concerns, 84
current implementation, 84
future prospects, 67, 76, 83, 84, 90, 174, 182, 185
legislative requirements, 146, 149, 154
Emergency medicine, 36
End-of-life conditions, 111–112
Engaging Privacy and Information Technology in a Digital Age, 84
Evidence-Based Practice Center Program, 195
Existing data and data systems, 20–21
accessibility, 124, 126–127b, 176
on childhood morbidity and mortality, 96–100
on chronic disease conditions, 100–103
collection methods, 69–72, 70t, 179–182
development of annual reports from, 8, 191
development of standardized measures based on, 8, 191
efforts to integrate and aggregate databases, 124–128, 128b
on end-of-life conditions, 111–112
on functional status of children and adolescents, 108–111
illustrative examples of challenges in using, 85–88
key findings, 67, 91–92, 137–138
life-course perspective in, 121, 123–124
limitations of, 1–2, 3, 4–5, 47–49, 55–59, 68, 74–85, 89, 90, 99–100, 102–103, 106–107, 110–111, 117–118, 120, 124, 125–128, 130–132, 135–136, 176–179, 191, 198, 207–208
linkage of population health indicators with public health interventions, 129–130, 181
measurement of disparities in health and health care, 3, 57–58, 77–79, 113–118
on preventable common health conditions, 103–107
privacy and confidentiality concerns, 84–85
range of indicators of child and adolescent health, 55–56
on social determinants of health, 51, 118–120, 178
standardization issues, 3, 74–76, 176–177
stepwise approach to improving, 6, 183–184, 185f
timeliness of reporting, 124, 176
See also Data collection; Data sources; Federal data collection and reporting systems
External Quality Review Organization, 300–301
F
Family Educational Rights and Privacy Act, 181, 201
Family structure and functioning
in measurement of social determinants of health, 199
rationale for measuring, 4, 178
See also Language spoken at home and parental language proficiency; Parents and caregivers
Federal data collection and reporting systems, 2, 72–73, 274–287t
current shortcomings, 91
efforts to improve quality measurement, 145–154, 172, 183
jurisdictional issues, 168
study goals, 18
See also specific program or agency
Federal Interagency Forum on Child and Family Statistics, 72, 75, 168, 186b, 193, 200, 201, 303–304
Federal Quality Workgroup of the CHIPRA Steering Committee, 145
Fetal programming, 121
Financing of health care
pediatric care considerations in payment reform, 147
quality improvement and, 147
Fluoridation, 41b
For the Public’s Health: The Role of Measurement in Action and Accountability, 50, 168
Foundation for Accountability, 247
Foundations of Lifelong Health Are Built in Early Childhood, The, 43
Functional status of children and adolescents, 7, 26, 28, 29, 55, 61, 95, 108–111, 132, 136, 173, 179, 199
Future Directions for the National Healthcare Quality and Disparities Report, 161
Future of Public Health, The, 40–41b
G
Geocode mapping, 168
Goals for child and adolescent health care quality
current goal-setting efforts, 3, 190
to prioritize data needs, 63–64
priority areas, 6–7, 43, 188–189, 190
recommendations for, 6–9, 183, 189–190
sources for, 188
in stepwise approach to data system improvement, 6, 183, 185–188
Great Smoky Mountain Study, 73–74
H
Health, United States, 51
Health and Human Services, 2, 43, 47, 72, 150, 252
core set of children’s health care quality measures, 14, 56, 150, 152–153b, 183, 206, 253
Federal Quality Workgroup of the CHIPRA Steering Committee, 35b
initial action agenda, 7
national quality strategy and national prevention strategy reports, 6, 8, 9, 148
recommendations for, 7–14, 186b, 188, 189–190, 193–194, 195, 197, 199, 201, 203, 206
Universal Claims Database for Health Research, 321
Health Care and Education Reconciliation Act, 17, 93
Healthcare Cost and Utilization Project, 96, 97–98, 100, 196, 256–260, 257–259t
Healthcare Effectiveness Data and Information Set, 74, 143, 150, 156, 166, 247, 248, 251, 253–255, 289–290, 291–292
Healthcare Research and Quality Act, 149
Health Data Interactive, 51, 127b
Health Indicators Warehouse, 89
Health information technology, 7, 13, 14, 35b, 83, 148, 174, 198
Health Information Technology for Economic and Clinical Health, 145, 149, 261
Health Insurance Portability and Accountability Act, 83, 84, 181, 201
Health literacy
costs of inadequate levels of, 60b
current patterns, 60b
as determinant of health and health care outcomes, 60b
need for improved health education, 60b
rationale for monitoring, 178–179
Health Resources and Services Administration, 35b, 197, 203
Health status of children and adolescents
adult health outcomes and, 28, 29
in community context, 28–29, 46–47
defining, for high-quality data system, 53–54
definition and conceptual scope, 25–30, 121, 165
determinants of, 1, 4, 26–27, 27f, 61, 169–170, 178, 179
international comparison, 16–17, 34–35
life-course perspective, 7, 44–45
need for standardized definitions and measures of, 75–76
perception of, by children and parents, 75
poverty effects, 136
prevalence of chronic conditions, 27–28, 100
public health intervention outcomes, 40–41b
See also Disparities in health and health care delivery; Goals for child and adolescent health care quality; Measures of health and health care; Monitoring health status of children and adolescents
Healthy People 2010/2020, 6, 26–27, 43, 45, 47, 51, 52, 126b, 129, 188, 190
Healthy Start program, 197
Hospitals
childhood morbidity and mortality data, 97–99
quality of care assessment, 81–82, 256–260
utilization data, 97
I
Immunizations, 37, 41b, 80, 310–311, 319–320
Indexes, defined, 24b
Indian Health Service, 35b, 78
Indicators, defined, 24b
Infant mortality, 17, 34–35, 39, 92, 200
Inpatient care data, 55
Institute of Medicine, 245–246
Insurance, health
in adolescent to adult care transitions, 163–164
claims data, 97
current data system, 87–88, 101
as determinant of health care access, 37–38
goals for health monitoring system, 94
sources of, 38
See also Children’s Health Insurance Program; Medicaid; Medicare; Public health insurance programs
Integrated framework of health indicators, 21, 89–90, 179–180, 205
Integration of data sources
birth and death record linkage, 98
current efforts and capacity, 56, 59, 90, 124–130, 128b, 151, 181
demonstration projects for, 207
government jurisdictional issues, 168, 188
illustrative examples of current challenges, 85–88
linkage of population health indicators with public health interventions, 129–130, 181
opportunities for, 167–168, 180–181
recommendations for, 11–12, 201, 203
within-state initiatives, 168, 169, 171, 261–262
Interagency Forum on Child and Family Statistics, 190
International Classification of Diseases, 75, 76, 83–84
J
Joint Commission on Accreditation of Healthcare Organizations, 247
K
Kaiser Permanente, 97
Key National Indicators Initiative, 204–205
Kids’ Inpatient Database, 86, 97–99, 100
Kids Integrated Data Set, 171, 204
L
Language spoken at home and parental language proficiency
current data collection on, 77, 178
effects on health and health care, 4, 31, 57–58
goals for health monitoring system, 94
implications for surveys of child health and health care, 192
recommendations for measurement of disparities in health and health care quality, 8–9, 193
Layering of data, 168, 171–172, 207
Leading Health Indicators for Healthy People 2020, 42, 189
Leukemia, 33
Life-course approach, 4
conceptual basis, 42, 120–121, 162
current data collections with, 121, 123–124, 162
determinants of health in, 42–43, 45–46, 48f
measurement of health, 95, 132
measurement of health functioning, 121–123
measurement of preventive services outcomes, 11
quality of care measurement, 141, 173
rationale, 7, 42, 92, 95, 132, 173, 181–182
recommendations for, 7, 8, 11, 188–190, 193, 197, 199
in setting of health and health care goals, 7, 8
trends in health research and practice, 43
Longitudinal data
current studies of children and youth, 73–74
rationale for collecting, 5, 12, 181–182, 202
Low birth weight, 37, 39–41, 121
M
Maternal and Child Health Bureau, 32b, 43, 45, 55, 75–76, 86, 251–252
Measures of health and health care
for accountability assessment, 141, 151
Children’s Health Insurance Program Reauthorization Act requirements, 34b, 35b
core set, 14, 64, 149–150, 155–156, 206
current system, 1, 3, 4, 8, 21, 130–132, 177–179
definition, 24b
developmental status, 122
four D’s of pediatric medicine, 142
goals for, 51–53, 93–94, 133, 135, 184
health functioning measurements, 121–123
integrated framework for, 21, 179–180
life-course perspective for, 95, 132
methodology for evaluating, 95
minimum basic data set, 64
need for coordinated approach to integrate, 89–90
for preventive services assessment, 136, 140–141
priority areas, 7, 43, 63–64, 95, 132, 188–189, 190
psychological functioning, 93
rationale for improving, 1, 16, 65, 92
recommendations for new, 10–11, 190
recommendations for periodic review, 9–10, 194–196
stepwise approach to improving, 6, 183–184, 185f
whole child approach, 4
See also Data collection; Data sources; Federal data collection and reporting; Monitoring health status of children and adolescents; Quality of care measurement; Standardization in measurement
Media exposure, 201
administration, 32b
data collection system, 31, 76–77, 78, 85, 117–118, 135–136, 137, 161, 162, 204, 254, 260, 291–292, 312–313, 325
data needs, 53
definition of child, 75
distribution of expenditures, 32b
eligibility system data, 314–315
enrollment patterns, 32b
purpose, 32b
quality of care measurement, 34b, 137, 143, 151–153
in stepwise approach to improving health care data system, 183
See also Insurance, health; Public health insurance programs
Medicaid and CHIP Payment Access Commission, 34b, 145
Medicaid Statistical Information System, 192, 204, 251, 252–253, 311–312
Medicaid Transformation Grant, 76–77
Medical data registries, 83
Medical Expenditure Panel Study, 85, 88, 96, 97, 98, 167–168
Medical home concept, 29, 37, 119, 147
Medical Homes Practice Measures, 295–296
See also Public health insurance programs
Medicare Hospital Compare, 290–291
Medstat Marketscan, 97
Mental health
assessment technology, 93
coordination of care, 157
developmental screening, 41b
hospital admissions, 98
life-course approach to health care, 45
longitudinal studies of youth, 73–74
prevalence of disorders, 36, 104, 156, 196–197
psychiatric hospital follow-up, 156–157
racial and ethnic differences, 114–115
recommendations for measurement, 11, 194, 197
shortcomings of current data system, 55–56, 154
MEPSnet/HC, 127b
Monitoring health status of children and adolescents
approach to assessing current system of, 19–20
capacity to monitor trends, 56–57, 94
in care transitions, 4, 162–164, 173, 179
conceptual framework for, 27f, 59–63, 63f, 65, 205
current shortcomings, 1, 3, 47–49, 54–58, 67, 91, 175–176
historical and conceptual evolution, 92–93
rationale, 1, 15–16, 67–68, 175
sentinel measures of quality of care, 156
See also Data collection; Measures of health and health care; Screening
Mood disorders, 104. See Behavioral health
Mortality patterns and trends, 33
from accidental injury, 36
among children and adolescents, 111–112
birth and death record linkage, 98
childhood obesity and, 39
leading causes of death, 96, 96b
public health intervention outcomes, 40–41b
quality of care measurement, 141
racial and ethnic differences, 114, 115
Multi-State Foster Care Data Archive, 204
N
National Advisory Council Subcommittee on Children’s Healthcare Quality Measures for Medicaid and Child Health Insurance Programs, 149–150, 155–156
See also Subcommittee of the National Advisory Committee
National Ambulatory Medical Care Survey, 127b, 307–308
National Center for Education Statistics, 125
National Center for Health Statistics, 36, 97, 99–100, 104, 112, 126b, 127b, 203, 256, 305–306
National Children’s Study, 73, 119–120
National Committee for Quality Assurance, 74, 142, 164, 247, 253, 289
National Death Index, 102
National Health and Nutrition Examination Survey, 36, 104, 105, 106, 107, 109, 127b, 168
National Health Care Quality Strategy, 147–148
National Health Care Survey, 127b
National Health Information Network, 204–205
National Health Information Survey, 251
National Health Interview Survey, 24b, 36, 88, 100, 102, 104, 107, 109, 110, 127b, 167–168, 256
National Home and Hospice Care Survey, 112, 127b
National Hospital Ambulatory Medical Care Survey, 127b, 308–309
National Hospital Discharge Survey, 127b, 306–307
National Immunization Survey, 24b, 127b
National Information Center on Health Services Research and Health Care Technology, 72
National Initiative for Children’s Healthcare Quality, 142, 247, 248
National Institute of Mental Health, 36
National Institute on Alcoholism and Alcohol Abuse, 107
National Institute on Drug Abuse, 107
National Institutes of Health, 111
National Longitudinal Study of Adolescent Health, 73–74, 109–110, 123
National Medicaid Quality Framework, 301–302
National Prevention and Health Promotion Strategy, 148, 197
National Prevention Strategy, 10–11
National Quality Forum, 142, 246–247, 248, 296–297
National Quality Strategy, 147–148
National Research Council, 167–168
National Survey of American Families, 125
National Survey of Child and Adolescent Well-being, 116–117, 118
National Survey of Children’s Health, 38, 100–101, 102–103, 104, 119, 165, 199, 251–252, 255
National Survey of Children with Special Health Care Needs, 24b, 101, 102, 109, 110, 199, 251–252
National Survey of Early Child Health, 101, 102, 251–252
National Survey of Family Growth, 104–105, 106, 107
National Vital Statistics System, 96, 98, 125, 127b, 153
Neighborhood and community health accountability issues, 52
health care in community context, 28–29, 46–47, 78
measurement of social determinants of health, 199, 200
National Prevention and Health Promotion Strategy, 148
place-based measurement, 179
as source of health status disparities in the United States, 58
See also Social determinants of health
Neonatal intensive care, 55
Newborn screening, 13
Nursing Home Survey, 112
O
Obesity, 35, 39, 44, 45, 104, 105, 108
Office of the National Coordinator for Health Information Technology, 35b
Oral health, 104, 115, 194, 196
recommendations for measurement, 11, 197
Out-of-home care, children in, 113
P
Panel Survey of Income Dynamics, 121
Parents and caregivers
barriers to effective health care for children, 59
child health outcomes for, 29
as data source on children’s health, 103, 169
as determinants of child health care access and outcomes, 4, 37, 58, 178
educational attainment, 117
engagement in data collection effort, 12
knowledge of child’s behavioral health, 59
perception of child’s health, 75
See also Language spoken at home and parental language proficiency
Patient Protection and Affordable Care Act (ACA), 17, 93, 145, 147–149. See Affordable Care Act
Patient-Reported Outcomes Measurement Information System, 111
Patient Safety and Quality Improvement Act, 84
Payment for health care
data collection challenges, 77
value-based approaches, 198
Pediatric ACO Demonstration project, 147
Pediatric Data Quality System Collaborative Measure Working Group, 247
Pediatric Quality Measures Program, 156
Performance Measurement: Accelerating Improvement, 163, 179
Personal health records, 83, 90
Physician Quality Reporting Initiative, 261, 297–299
Place-based measures, 13, 179, 205
Population-based data collection, 69–70, 71
Population health efforts
current data sets for, 20, 31, 50–51, 72–73, 190, 251, 274–287t
data needs, 52
linkage among data sets for, 5, 6, 13, 31, 52
linkage with public health intervention data, 129–130, 181
opportunities for improved data collection, 201
quality of care measurement, 139–140, 251–252
using metrics to drive improvement in, 51–53
Population patterns and trends
age, 30
insurance coverage, 37
See also Demographic data
Post-Licensure Rapid Immunization Safety Monitoring, 315–316
Poverty
implications for health, 136
measurement challenges, 78
patterns and trends, 8–9, 16, 30, 31–33, 78, 136
See also Social determinants of health
Pregnancy
birth and death record linkage, 98
current data collection, 104
linking prenatal care data with pediatric records, 162–163
measurement of disparities in prenatal care, 194
Vaccines and Medications in Pregnancy Surveillance System, 319–320
Pregnancy Risk Assessment and Monitoring System, 104, 106, 126b
Pregnancy to Early Life Longitudinal Data System, 169
President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry, 54
Preventable common health conditions
trends, 104
Preventive services
adolescent pregnancy, 45
current utilization, 40b
defining, for high-quality data system, 54
gaps in current measurement, 3
insurance as determinant of access to, 37
measurement challenges, 136, 140–141
National Prevention and Health Promotion Strategy, 148
quality of care measurement, 165–166, 177
rationale, 10
recommendations for data collection, 10–11, 13, 194, 196–198
sentinel measures of quality of care, 156
See also Immunizations; Screening
Privacy and confidentiality issues, 5, 12, 84–85, 181, 182, 203, 204
Private sector
collaboration on core set of standardized measures, 64
development of quality measures in, 135b
incentives for health care quality measurement, 172, 182
initiatives to advance quality of care and quality measurement, 245–248
insurance coverage, 38
role in quality improvement in health care, 147, 148, 198
Promoting Health Development Survey, 165–166
Public health insurance programs
application forms data, 260
enrollment patterns and trends, 9, 16, 31, 38
goals for health data collection, 133
historical development, 143
quality of care measurement and reporting, 137, 143
See also Children’s Health Insurance Program Reauthorization Act; Medicaid; Medicare
Public health interventions, 40–41b
Q
Quality Improvement System for Managed Care, 299–300
Quality of care
access and utilization issues in, 50, 61–62
Centers of Excellence demonstration projects, 150–151
in conceptual framework of determinants of children’s health, 61–62, 63f
defining essential services for evaluation of, 54
demonstration grants, 145
measurement of. See Quality of care measurement
mental health services, 156–161
opportunities to improve, 158–160t, 173
private sector initiatives, 245–248
in public health insurance programs, 137–138
recommendations for annual report on, 9, 193
social determinants of, 11, 173, 198–199, 201
stepwise approach to data system improvement, 6, 183–184, 185f
See also Disparities in health and health care delivery
Quality of care measurement
across multiple domains, 164–165
age group specificity, 144
aspirational measures, 155
conceptual approach to, 49
continuous improvement, 196
core set of measures, 10, 14, 34b, 149–150, 151, 152–153b, 155–156, 183, 196, 206
data needs, 15–16, 52, 173–174
effectiveness measures, 137, 138b
feasibility criterion for evaluation of measures, 155
government jurisdictional issues, 168
grounded measures, 155
impediments to development of, 140–141
importance criterion for evaluation of measures, 155–156
initial efforts to develop, 142–144
integration of data with other health system data, 52
intermediate measures, 155
life-course perspective in, 42–43, 141, 173
medical home concept and, 29
mental health and substance abuse measures, 156–161
opportunities for improving, 4, 5, 12, 14, 16, 173–174
periodic review of, 9–10, 194–195
in preventive services, 11, 165–166, 172–173, 177
priority areas, 6–7, 10, 188–189
in private care settings, 198
private sector initiatives, 245–248
in public health insurance programs, 137, 143
recent efforts to improve, 34–35b, 145–154, 173, 182–183, 195–196
safety measures, 144
sentinel measures, 156
shortcoming of current system, 1, 3, 8, 31, 54–55, 135–136, 142, 144, 172–174, 183
stakeholder objectives in, 140
structure and process considerations in, 50, 141
validity of measures, 155, 183
R
Race/ethnicity
access to care in public health insurance programs, 138
case mix adjustment for data analysis of, 81, 82
current data collection system, 4, 57, 77–78, 117–118, 178, 192, 260
goals for health monitoring system, 94
health and health care disparities and, 31, 34, 58, 92b, 113–115
health insurance coverage and, 38, 192
mortality patterns, 114
need for improved data collection, 78–79, 154, 178, 192–193
preventive care utilization and, 40b
recommendations for measurement of disparities in health and health care, 8–9, 193
RAND Corporation, 248
Real Time Immunization Monitoring System, 317–318
Recommendations, 21
for annual reporting of child and adolescent health and health care quality, 9, 193
for development of standardized measures to reduce health and health care quality disparities, 8–9, 193
implementation actions for, 186–187b, 193–194, 197–198, 199–200, 201, 203–205, 207–208
to improve capacity to link data sources, 11, 201, 203, 205–207
to improve data collection and reporting, 11, 199, 200, 202–205
for interagency collaborations, 11, 199
for new measures and data sources, 10–11, 190, 196–200
for periodic review of health and health care quality measures, 9–10, 194–196
for setting goals for child and adolescent health, 6–8, 189–190
stepwise approach to implementation, 6, 183–184, 185f
Reference groups, 5, 13, 179–180
Reporting of health and health care quality findings
accessibility issues, 124, 126–127b
public health insurance program requirements, 137, 143
study goals, 18
timeliness, 124
See also Annual reports
Robert Wood Johnson Foundation, 129, 130
S
Samples, population, 69
developmental, 41b
newborn, 13
Service-based data collection, 70, 74
Sexual and reproductive health, 45, 46, 47, 105. See also Pregnancy; Sexually transmitted infections
Sexually transmitted infections, 45, 105, 197
Social determinants of health
in conceptual framework of children’s health, 26–27, 27f, 61
in county health ranking model, 169–170
current data collection system, 4, 51, 118–120, 178
gaps in monitoring, 3, 4, 57, 178
life-course perspective, 45–47
as priority area for data collection, 7, 95, 188–189
recommendations for measurement, 11, 198–199, 201
Socioeconomic status
case mix adjustment for data analysis of, 81–82
childhood health as factor in, 39
costs for families with special health care needs child, 29
current data collection system, 4, 78, 90, 113, 115–116, 117, 178
goals for health monitoring system, 94
health insurance coverage and, 38
measurement challenges, 78
in measurement of social determinants of health, 199, 200
preventive care utilization and, 40b
quality of care measurement, 173
recommendations for measurement of disparities in health and health care quality, 8–9, 192, 193
reference group criteria, 179–180
significance of, in health outcomes, 92
as source of health status disparities in the United States, 17, 31, 58, 78
See also Poverty
Special health care needs, children with
access to care in public health insurance programs, 138
costs for families of, 29
current data collection system, 55, 101
definition, 55
health care expenditure for, 100
medical home concept, 119
population patterns and trends, 36, 55, 100, 108
quality of care measurement, 136
recommendations for measurement of disparities in health and health care quality, 8–9, 193, 194
See also Chronic disease conditions; Disability
Specialty medicine, 37, 137–138
Standardization in measurement
case mix adjustment strategies, 79–80
core set of health and health care quality measures, 14, 206
costs and benefits, 77
current data collection system, 3, 67, 74–76, 91, 132, 176–177, 192, 254
of disparities in health and health care quality, 8–9, 176, 191–192
of essential health services, 54
federal leadership, 168, 206–207
functional status measures, 136
future prospects, 151
improving state capacity for, 161–162
innovation in measurement and, 152–153
minimum basic data set for, 64–65
model-based, 80
need for, in public health insurance program, 137
need for periodic review of measures, 194
recommendations for, 6, 9, 90, 193
for state quality reporting, 152–153
in stepwise approach to data system improvement, 6, 183–184
State and Local Area Integrated Telephone Survey, 86, 101, 102–103, 104. See also Telephone surveys
State Children’s Health Insurance Program, 32b, 143, 254
States
capacity to integrate data from, 75
capacity to integrate data within, 261–262
confidentiality of medical data, 85
data sets for studying disparities in health and health care, 117–118
data warehousing capabilities, 261
efforts to improve quality measurement capacity, 150–154, 161–162, 168–172, 173
recommendations for data collection, 14, 204
recommendations for improving capacity to use data sets, 6, 12–14
reporting of health outcomes data, 124–125
support for measurement efforts in, 195, 207
Stratified reporting, 80
Subcommittee of the National Advisory Committee, 64
See also National Advisory Council Subcommittee on Children’s Healthcare Quality Measures for Medicaid and Child Health Insurance Programs
Substance abuse, 11, 45, 46, 154, 156–161, 197
Substance Abuse and Mental Health Services Administration, 35b, 107, 119
Sudden Infant Death Syndrome, 37
Supplemental Security Income, 101
Surgeon General, 36
Surveillance systems, 50–51. See also Monitoring health status of children and adolescents
Survey of Income and Program Participation, 115–116, 168
Systemized Nomenclature of Medicine, 83–84
T
Telephone surveys, 102–103. See also State and Local Area Integrated Telephone Survey
Timeliness of data, 11–12, 124, 176, 203
To Err Is Human: Building a Safer Health System, 245
Transparency in data collection, 5, 11, 12, 124, 161, 180, 202–204
U
Underserved populations, 5, 10, 48–49, 151
Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, 57
Unintentional injury, 36, 96, 98, 127
Unique identifiers, 11, 187b, 202, 204, 252
V
Vaccines. See Immunizations
Vaccines and Medications in Pregnancy Surveillance System, 319–320
Vulnerable populations
goals for health monitoring system, 10, 94, 199
quality of care assessments, 173
W
Well-child services, 37, 38, 40b, 150, 152b, 161, 165, 166, 167b
Wellpoint/HealthCore, 97
When Children Die, 112
WISQARS™, 127b
World Health Organization, 25, 28, 111
Y
Young Adult Health Care Survey, 165
Youth Online, 127
Youth Risk Behavior Surveillance System, 105, 106, 107, 119, 127