Index
Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine
ISBN: 978-1-80262-310-9, eISBN: 978-1-80262-309-3
ISSN: 2050-2060
Publication date: 15 November 2023
This content is currently only available as a PDF
Citation
(2023), "Index", Miori, V.M., Miori, D.J., Burton, F. and Cardamone, C.G. (Ed.) Data Ethics and Digital Privacy in Learning Health Systems for Palliative Medicine (Studies in Media and Communications, Vol. 23), Emerald Publishing Limited, Leeds, pp. 157-161. https://doi.org/10.1108/S2050-206020230000023013
Publisher
:Emerald Publishing Limited
Copyright © 2024 Virginia M. Miori, Daniel J. Miori, Flavia Burton and Catherine G. Cardamone
INDEX
Accountability principle
, 15
Accountable Care Organizations (ACOs)
, 19
Advance Care Planning
, 20
Advocacy
, 120
Affordable Care Act (ACA)
, 19, 100
Agency for Healthcare Research and Quality (AHRQ)
, 2
Allscripts
, 80
Alteryx Designer Product
, 35
American Community Survey (ACS)
, 27, 29, 125
data
, 64
data profile
, 31–32
wrangling ACS data
, 30–32
Anderson-Darling Goodness of Fit
, 92
Annual Homeless Assessment Report
, 28
Anticipatory grieving
, 7
Application programming interfaces (APIs)
, 23, 30, 126, 140
usage
, 140–145
Architecture
, 138
Behavioral Risk Factor Surveillance System (BRFSS)
, 28, 32–35
Bias
, 6, 32, 80
Biomedical ethics
, 152
Body Mass Index (BMI)
, 35, 71
Bundled payments
, 20
Bureau of Economic Analysis
, 4
Bureau of Economic Data (BEA)
, 62
Bureau of Labor Statistics
, 4, 62
California Consumer Privacy Act of 2018 (CCPA)
, 13
Care group
, 99, 101, 120
Center to Advance Palliative Care (CAPC)
, 6
Centers for Disease Control (CDC)
, 6, 28, 62
BRFSS
, 4, 70–77, 112
Centers for Medicare and Medicaid Services (CMS)
, 6
Cerner
, 80
Certificate Authority (CA)
, 138
Children’s Health Insurance Program (CHIP)
, 19
Chronic care management
, 20
Chronic conditions
, 71
Client
, 112
Client–server model
, 137
Clinical decision support (CDS)
, 19
Collection limitation principle
, 14
Comma separated values (CSV)
, 80
Comorbidity count distribution
, 92–94
Comprehensive care for joint replacement (CJR)
, 20
Comprehensive Primary Care Plus program (CPC+ program)
, 20
Consumer Assessment of Healthcare Providers and Systems (CAHPS)
, 19
Consumer privacy law in US
, 13
Contingency table
, 87
Continuum of Care Programs (CoCs)
, 28
Cross-Agency Priority (CAP)
, 62
Cross-reference data base definition
, 126–128
Cumulative Distribution Functions (CDFs)
, 87
Current procedural terminology (CPT)
, 19
Data mapping to characteristics of care
, 112–113
Data privacy
, 82
API
, 140–145
architecture
, 138
dataset generation
, 148–149
installation of client components
, 139–140
Kaplan-Meier curve generation
, 149
Kaplan-Meier data
, 148
Palliative Patient Web Pages
, 145–148
security
, 138
subscription
, 138
Data profiles (DPs)
, 30, 125
ACS
, 31–32
DP02
, 37–43
DP02001E
, 30
DP02001ME
, 30
DP02001P
, 30
DP02001PM
, 30
DP03
, 44–49
DP04
, 50–55
DP05
, 56–59
Data quality principle
, 14
Data repository design
cross-reference data base definition
, 126–128
cross-reference example
, 131
data base tables for storing targeted ACS five-year data
, 132–133
populating cross-reference data
, 128–131
retrieving ACS five-year data
, 131–132
storing ACS five-year data
, 134
Data science
address disparities in access to palliative care
, 8
concerns in palliative care
, 7
facilitating transition to palliative care
, 7
Database
, 126
Death Anxiety
, 7
Decision support
, 3
Decryption
, 138
Demographic
, 28
Denial of Need for Care
, 120
Digital certificates
, 138
Digital Imaging and Communications in Medicine (DICOM)
, 4
Digital privacy
, 10
E-Government Act of 2002
, 13
Education
, 68–69, 98–99
Electronic Communications Privacy Act (ECPA)
, 12
Electronic Health Records (EHR)
, 4, 17–18, 80
addition popular EHRs
, 89
data privacy and accuracy
, 81–82
primary characteristics
, 81
systems
, 80
Electronic Medical Record (EMR)
, 80
Electronic Palliative Care Coordination Systems (EPCCS)
, 19
Emergency room (ER)
, 22
Employment
, 69, 99
Encounter Notification Services (ENS)
, 22
Encryption
, 138
Epic
, 80
Ethics
, 152
additional observations
, 154
assiduous cultivation of data sources
, 155
avoid imposing non-clinical risks
, 153
common good
, 154
conduct responsible activities
, 154
informed consent
, 155
LHSs and
, 152
medical decision-making
, 155
optimal clinical care
, 153
reduce health inequalities
, 154
respecting clinician judgment
, 153
respecting rights and dignity of patients
, 152–153
Evaluation and management (EM)
, 21
Federal Communications Act
, 11
Federal data strategy
, 62
Federal Information Processing System (FIPS)
, 132
Federal Wiretap Act of 1968
, 12
Fourth Amendment’s limitation of searches and seizures
, 11
Framingham Study, The
, 2
Freedom of Information Act (FOIA)
, 12
Gehan-Breslow-Wilcoxin test
, 117
General Data Protection Regulation on Scientific Research (GDPR)
, 15
Generic Module Framework (GMF)
, 82
Geriatric Syndrome
, 97
Group
, 2, 149
Group assignment
, 115–116
GUID
, 141, 143, 148
Hazard rate
, 118
Health and Human Services (HHS)
, 19
Health information exchange (HIE)
, 19
tapping into HIE services
, 22–23
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
, 9–10, 12–13, 23, 80
Privacy Rule
, 81
Health Management Organizations (HMOs)
, 67
Healthcare system
, 17
Heuristics in palliative care
, 6–7
Home movement, riding hospital at
, 24
Homeless Data Exchange (HDX)
, 28
Homeless Research Institute
, 6
Housing and Urban Development Exchange (HUD Exchange)
, 4, 28, 64
Illusion of control
, 7
Income
, 70, 100
0%–150% of poverty level by sex-race-age group
, 109
150%–250% of poverty level by sex-race-age group
, 110
Incomplete secondary education by sex-race-age group
, 103
Individual participation principle
, 15
Information blocking, updated rules regarding
, 23–24
Information technology
, 19, 22, 24
Informed consent
, 155
Instagram
, 62
Insurance
, 67–68, 99–100
International standards for privacy
, 14–15
Internet of Things (IoT)
, 5
JavaScript Object Notation (JSON)
, 132
Kaplan-Meier analysis
, 117
Kaplan-Meier curve
, 113–115
generation
, 117–118
generation
, 149
mean and median output
, 117
pairwise tests on
, 118
use of
, 118–120
Kaplan-Meier data
, 148
Kaplan-Meier survival analysis
, 94, 101
Katz test
, 11–12
Katz v. The United States
, 11–12
Learning activities
, 152
Learning Health Systems (LHSs)
, 1–2, 112, 137, 151
address disparities in access to palliative care
, 8
ethical foundation for
, 152
ethics and
, 152
recommendations
, 3
Legal standards
, 13
Log-Rank test
, 117
Luxembourg data protection authority
, 15
Machine learning
, 7
Mantle-Cox test (see Log-Rank test)
Medicaid
, 18
Medical decision-making
, 155
Medicare Access and the Children’s Health Insurance Program Reauthorization Act (MACRA)
, 19
Medicare beneficiaries and data
, 18–19
Medicare Shared Saving Programs (MSSP)
, 19
Meditech
, 80
Merit-based Incentive Payment System (MIPS)
, 19
Meta (Facebook)
, 62
Metabolic Syndrome
, 71
Metadata
, 125–126, 128
Migration Policy Institute (MPI)
, 4, 6, 64
National Health Interview Survey (NHIS)
, 6
National Institutes of Health (NIH)
, 82
Natural Language Processing (NLP)
, 7
New York Senate Bill S6701
, 13
Olmsted v. The United States
, 11
Openness principle
, 14
Oregon
, 22
Organization for Economic Co-operation and Development (OECD)
, 13–14
Overall Health
, 120
Palliative care
, 2, 18–19, 91, 137
approaches to supporting palliative care data collection in real time
, 21–23
data science address disparities in access to
, 8
data science concerns in
, 7
data science facilitating transition to
, 7
heuristics in
, 6–7
key barriers to
, 3
providers
, 2
Palliative data
, 4
validity
, 5
variety
, 4–5
velocity
, 5
veracity
, 5
volatility
, 5
volume
, 4
Palliative Patient Web Pages
, 145–148
Personally Identifiable Information (PII)
, 13, 61
Poverty level
, 32, 64
PRAXIS
, 80
Prescription Drug Monitoring Programs (PDMPs)
, 20
Primary Care First Program
, 20
Privacy
, 9
current understanding of privacy in US
, 13–15
GDPR
, 15
history of privacy in US
, 10–13
Privacy Act of 1974
, 13
Private insurance
, 67
Private key
, 138
Protected Health Information (PHI)
, 12, 80
Public data sources
, 27–29
BRFSS
, 32–35
CDC BRFSS
, 70–77
employment
, 69
evolving nature of data
, 62–63
federal data strategy
, 62
income
, 70
overall data aggregation
, 35
population characteristics
, 63
US Census ACS
, 63–69
US census five-year ACS
, 29–30
wrangling ACS data
, 30–32
Public key
, 140
Public key infrastructure (PKI)
, 138
Public Use Microdata Sample (PUMS)
, 84–85
Publicly available data
, 79
Purpose specification principle
, 14
Python script
, 131
Quality of life
, 118
Query
, 146
Referral process
, 18
Refugee Processing Center (RPC)
, 6
Remote patient monitoring platforms
, 17–18
Right to privacy
, 10
Risk-based payment systems, intersecting with
, 17–18
Sampling
, 148
Secondary education by sex-race-age group
, 104
Security
, 138
safeguards principle
, 14
Server
, 12, 81
Simulation
, 82
SQL
, 128
Stanford Encyclopedia of Philosophy online
, 10
Stratified random sampling
, 149
Subscriber
, 138
Survival analysis
, 112
Synthea
, 82
augmenting Synthea data
, 84–87
comorbidity count distribution
, 92–94
conditions
, 90
CSV
, 83
data baseline
, 91–92
data mapping process
, 112
demographic characteristics
, 95–98
demographic summary
, 101
education
, 98–99
employment
, 99
identifying palliative patients
, 94–95
income
, 100
insurance
, 99–100
output files
, 83
output formats
, 83
simulation
, 82
Synthetic patient records
, 87
Synthetic patients
, 92
Tarone-Ware Test
, 117
Telehealth services
, 17–18, 21
Text mining
, 7
Translation
, 64–66, 120
Twenty-first Century Cures Act
, 23
Twitter
, 62
Unconscious bias
, 5–6
Underemployed status by sex-race-age group
, 106
Underinsured by sex-race-age group
, 108
Unemployed status by sex-race-age group
, 105
Uninsured by sex-race-age group
, 107
United States (US)
, 2, 18, 27, 92, 152
current understanding of privacy in
, 13–15
history of privacy in
, 10–13
United States Census Bureau
, 6, 30, 62, 126
United States Core Data for Interoperability (USCDI)
, 23
USCDI V2
, 23
Unstructured data analysis
, 7
US Census American Community Survey
, 4, 28, 63, 112
education
, 68–69
insurance
, 67–68
translation
, 64–66
US census five-year ACS
, 29–30
US Department of HUD
, 6
Use limitation principle
, 14
Validity
, 5
Value-based care and data use incentives
, 19–21
Variety
, 4–5
VBA script
, 130
Velocity
, 5
Veracity
, 5
Volatility
, 5
Volstead Act
, 11
Volume
, 4
WhatsApp
, 62
World Health Organization (WHO)
, 2, 6
Wrangling
, 4, 30–32
- Prelims
- Chapter 1: Making the Case
- Chapter 2: Privacy and Learning Health Systems
- Chapter 3: Shaping the Continuum of Care Through Public Policy and Data
- Chapter 4: Public Data Sources: Cleaning and Wrangling
- Chapter 5: Public Data Sources: Sizing the Palliative Population
- Chapter 6: Private Data Sources, Data Privacy and Data Simulations for Palliative LHS
- Chapter 7: Synthea Descriptive Analysis
- Chapter 8: Palliative LHS Analysis
- Chapter 9: Data Repository Design for Public Data Analysis
- Chapter 10: Palliative LHS Development and API to Ensure Data Privacy
- Chapter 11: Learning Health Systems Ethics Review
- Index