Personal Health Informatics: Patient Participation in Precision Health

Foreword
Preface
Overview
Section I: The State-of-the-Art Novel Care Delivery Models
Section II: Methods for Translating Biomedical Research and Real-World Evidence into Patient-Centric Precision Health Application
Section III: Methods for Patient-Centric Design
Section IV: Ethics, Bias, Privacy, and Fairness
Acknowledgment
Contents
About the Editors and Contributors
About the Editors
About the Contributors
Part I: The State-of-the-Art Novel Care Delivery Models
Chapter 1: E-enabled Patient-Provider Communication in Context
Introduction
Case Example #1: Development of the E-Health Care Model and Implementation in the PreClinic in Denmark
Evaluation of ECM Accomplishments
Case Example #2: Task-Sharing Mental Health Primary Care Delivery Model Via Smart Phones in Pacific Island Countries
The Study
Summary of Results
Challenges and Opportunities
Future Directions
Case Example #3: Colombia: Prenatal Care and Early Risk Identification
A Systems Model for E-Health Enabled Collaborative Care Delivery
Collaborative Care Delivery in the Time of COVID-19
Lessons on Collaborative Care Delivery from COVID-19
Discussion
References
Chapter 2: Direct Primary Care: A New Model for Patient-Centered Care
Primary Care, the Patient-Centered Medical Home, and Direct Primary Care
Primary Care
Patient Centered Medical Home
Direct Primary Care
Accreditation Process
Experience of the Patient and Provider
The Patient-Provider-Payer Shift
The Implications for DPC in Practice
Mixed Methods Research Methodology
Qualitative Methods
Quantitative Methods
Data Types
Data Quality
Results
Timely Access
Effectiveness
Patient-Centered
Efficiency/Affordability
Conclusions, Implications, and Future Directions
References
Chapter 3: Smart Homes for Personal Health and Safety
Introduction
Sense4Safety: Using Smart Home Technology to Reduce Fall Risk
Falls and MCI as Significant Public Health Problems
Rationale for Passive In-Home Sensing
Use of Passive Monitoring Technology for Early Detection of Functional Changes
The Sense4Safety Intervention
Ethical Implications
Conclusion
References
Chapter 4: Health App by Prescription: The German Nation-Wide Model
Introduction
Overview
German Healthcare System
Licensing and Marketing Authorization
Reimbursement by the Statutory Health Insurance (SHI)
New Digital Services in the German Healthcare System
Electronic Health Card and Personal Health Records (2000–2020)
Digital Health Applications (Since 2020)
First Experiences with DiGAs
Acceptance and Knowledge About DiGA Among German Healthcare Professionals and Citizens
DiGA as a New Business Model for Healthcare Start-ups and New Strategic Partnerships
Conclusion
Glossary
References
Chapter 5: Patient Portal for Critical Response During Pandemic: A Case Study of COVID-19 in Taiwan
Millennium Challenges in Pandemic Prevention and Control
Core Needs of Effective Pandemic Prevention and Control
Identification of Causes of Infections
Prevention of Outbreaks of Infections
Prevention of Becoming Pandemic
Recognition of Source Control
Administrative, Environmental and Engineering Control
Personal Protective Control
Effectiveness of Epidemic Prevention in Asian Cases
Critical Success Factors and Gaps of Effective Pandemic Prevention and Control
The Overview of mHealth for Epidemic and COVID-19
ICT Innovations for the Pandemic Prevention and Control
Early Screening
Contact Monitoring
Rapid Response
Effective Control
Right Information to the Right People for the Right Decisions at the Right Time
ICT Solutions
Personal Health App
Personal Wearable Devices
Monitoring and Management Web Application
Interoperability for Big Data and Analytics
s&cHealth (Smart and Connected Health): New Model to Link from the Individuals, Stakeholders, Communities, Society and the Governments
Smart Community Quarantine Management mHealth Platform
Remaining Issues
Obsolescence of ICTs
Trade-off Between Individual Privacy and Public Goods
Non-ICT Challenges: Culture, ICT Literacy, Infrastructure
References
Chapter 6: The Integration of Patient-Generated Health Data to Clinical Care
Introduction
Capture and Sharing of PGHD
Transfer of PGHD
Challenges Incorporating PGHD into Clinical Care
Facilitators for Incorporating PGHD into Clinical Care
Evidence of Impact
Exemplars of PGHD Integration and Using in the Clinical Care Setting
Future Work and Opportunities
Efficient and Usable Clinical Workflow Integration
Telehealth and PGHD
Conclusion
References
Part II: Methods for Translating Biomedical Research and Real World Evidence into Patient-Centric Precision Health Application
Chapter 7: Role of Digital Healthcare Approaches in the Analysis of Personalized (N-of-1) Trials
Introduction
Personalized Trials
Background on CLBP
Study Design
Recruitment and Study Population
Data Collection (EMA Pain, Fatigue, and Stress)
Analyzing EMA Data
R Shiny App for the CLBP Trial and Trial Results
Conclusion
References
Chapter 8: Early Detection of Cognitive Decline Via Mobile and Home Sensors
Introduction
Cognitive Processes and Related Behaviors
Memory
Attention
Measurement & Computational Modeling
Computer-Based Assessment of Cognitive Function
Assessment Using Computer Games
Metrics of Cognition
Game Development
Measure of Verbal Fluency
Measure of Executive Function
Measure of Divided Attention
Measure of Working Memory
Summary Model of Cognitive Assessments
Differential Privacy and Federated Learning
Conclusions and Future Work
References
Chapter 9: The Role of Patient-Generated Data in Personalized Oncology Care and Research: Opportunities and Challenges for Real-World Implementation
Introduction
Current Practices and Trends about RWD collection in Routine Cancer Care
Overview of CPG in Cancer Care
Current Practices on RWD Collection across the Patient Journey
Use of Other Tools for Longitudinal Patient Data Collection
Precision Oncology Care beyond Genes: The Role of Exposome Informatics in a Holistic Healthcare Delivery Model
Introduction to Exposome Informatics
Determinants of HRQoL of Cancer Survivors
Revisiting the Roles of the Oncology Team to Deliver a Holistic Care
Building a Learning Healthcare System in Oncology Care upon a Value-Based Care Schema
Introducing the Learning Health System Concept
Patient-Generated data Actionability in Oncology Routine Care
Leveraging Data science for Boosting RWE Discovery
The Shift from Fee-for-Service to Value-Based Care Schema
Challenges for Real-World Deployments of Longitudinal Patient-Generated Data Collection Digital Tools
Regulatory Challenges
Technological Challenges
Conclusions
References
Chapter 10: Semantic Technologies for Clinically Relevant Personal Health Applications
Decision Support for Health Behavior Change
Semantic Technologies and the Personal Health Knowledge Graph
Combining Learning and Logic for Personal Health Applications
Nutrition Self-Management for People with Type 2 Diabetes
Populating a Personal Health Knowledge Graph with Personalized Assessments of Dietary Needs and Preferences
Personalizing Dietary Recommendations
Summary
References
Chapter 11: Privacy Predictive Models for Homecare Patient Sensing
Introduction
Related Works
The State of the Arts: Homecare Monitoring System and Assisted Living Technologies
Privacy Attitudes and Concerns in Homecare Monitoring Systems
Legal and Ethical Consideration Regarding Homecare Sensing
The Privacy Paradox
Description of the Questionnaire Design and Predictor Selection
Focus Group Discussion
Questionnaire Design and Data Collection
Data Analysis and Algorithm Selection
Results
Data Analysis and Algorithm Selection
Challenges, Opportunities, and Future Scope
References
Chapter 12: Detecting Personal Health Mentions from Social Media Using Supervised Machine Learning
Introduction
Related Work
Social Media and Health Research
Classification on Social Media
Method
The Personal Health Status Mention Problem
Construction of a Health Mention Corpus
Health Mention Classifiers
Performance Measures
Experimental Methodology
Results
Dataset
How People Disclose Personal Health Status on Twitter
Classification Results
Sensitivity Analysis
Discussion
Principal Findings
Impact on Health-Related Research
Limitations
Future Work
Conclusions
References
Chapter 13: Common Data Models (CDMs): The Basic Building Blocks for Fostering Public Health Surveillance and Population Health Research Using Distributed Data Networks (DDNs)
Introduction
Data as the Organizational Asset
Discordance between Data Growth and Data Sharing
Alleviating the Concerns of Data Owners
Data Models (DMs) and their Critical Building Blocks
Establishing the Necessity (Public/Population Health Needs) for Common Data Models (CDMs)
What is a Possible Approach to address this Interoperability Challenge?
Common Data Models (CDMs): Definition, History, Utility, and Steps in the Process
Key Principles related to CDMs
How do the CDMs foster Public Health Surveillance/Population Health Efforts?
Most Popular CDMs
Vaccine Safety Datalink (VSD) Shared Data Network (SDN) (Vaccine Safety Datalink (VSD) n.d.)
Health Care Systems Research Network (HCSRN) VDW (HCSRN n.d.)
Informatics for Integrating Biology and the Bedside (i2b2) CDM (Weeks and Pardee 2019; Anon. n.d.-a)
Food and Drug Administration (FDA) Sentinel (Weeks and Pardee 2019)
The National Patient-Centered Clinical Research Network (PCORnet) CDM (Weeks and Pardee 2019; PCORnet n.d.)
Observational Medical Outcomes Partnership (OMOP) CDM (OMOP n.d.)
Real-world Examples of the Applications of CDM
Limitations
Conclusion
References
Part III: Methods for Patient-centric Design
Chapter 14: Person-Centered Design Methods for Citizen Science
Citizen Science
What Is Person-Centered Design?
Methods
Guiding Principles
Person-Centered Design-Thinking Methods
Empathic Design
Human-Centered Design-Thinking Process
Research Phase
Ideation Phase
Refinement Phase
Putting it all Together
Conclusions
References
Chapter 15: Leveraging Library and Information Science to Discover Consumer Health Informatics Research
Introduction
Designing a Literature Search
Consult with Information and Library Scientists
Draft a Research Question
Operationalize Elements
Prioritize Elements
Executing a Literature Search
Consider Concept Combinations
Choose Relevant Databases
Understand the Difference Between Keyword and Subject Heading Queries
Keyword Queries
Subject Heading Queries
Keyword Versus Subject Heading Queries: What Is the Optimal Balance?
Exemplar Literature Search
Case in Point
Conclusion
References
Glossary
Chapter 16: Ecosystem of Patient-Centered Research and Information System Design
Overview
From Precision Medicine to Precision Care
The Emerging Ecosystem
Patients and Caregivers
Citizen Scientists
Pro Research Network and Community-Based Participation
The Partnership Between Private and Public Organizations
Health Systems
Payers
Regulation Authorities
Standardization Ecosystems over Health Data Exchange
Standardization Ecosystems over Health Knowledge
Discussion
The Opportunities and Common Challenges Facing the Ecosystem
Technical Challenges
Organizational Challenges
Collaboration Challenges
Conclusion and Future Direction
References
Chapter 17: Personalizing Research: Involving, Inviting, and Engaging Patient Researchers
Overview
Involving Patients In Research Has Many Benefits
Inviting Patients To Participate In Research—As Partners
Identifying Partners—Starting With Your Own Patients Or Past Research Participants
Proactively Recruiting Patients
Ask Patients How They’d Like To Be Involved In Research
Involving Patients In Prospective Or Existing Research Projects
Relationship Building And Culture Setting Is Important
Setting Expectations Matters For Everyone Involved
Training And Skill-Building For Patient Partners In Research
Engaging Patient Researchers Who Are Driving Their Own Research
If You Want To Support Patient Researchers, First Ask: “How Can I Help?”
Conclusion
References
Chapter 18: User-Centered Development and Evaluation of Patient-Facing Visualizations of Health Information
Introduction
Defining Patient-Facing Visualizations
Importance of User-Centered Design and Evaluation
Best Practices for User-Centered Design
Suggestion 1: Selecting a Framework
Suggestion 2: Gather Requirements to Understand the End User
Suggestion 3: Apply Rigor in Designing Evaluation Studies
Case Study: User-Centered Design of a Mobile Application to Support Older Adults with Routine Symptom Monitoring
Overview
Relevance Cycle
Rigor Cycle
Design Cycles
Design Phase I: Design Features
Design Phase II: Perceived Usability
Design Phase III: Comprehension of Visualizations
Design Phase IV: Heuristic Evaluation for Mobile Interface
Conclusion
Chapter Review Questions
Questions
Answers
References
Chapter 19: Social Determinants of Health During the COVID-19 Pandemic in the US: Precision Through Context
Concepts and Frameworks for Examining Social Determinants of Health (SDoH)
Individual
Interpersonal
Institutional
Community
Policy
Overview of Evidence Linking SDoH and Health Outcomes
Cardiovascular Diseases
Obesity
Healthcare Acquired Diseases
Infectious Diseases
SARS-CoV-2 and COVID-19
Overview of Initiatives Examining SDoH in the Context of the COVID-19 Pandemic
Gaps and Limitations in the Measurement of SDoH in the Existing Literature
Additional Challenges in Incorporating SDoH Data into Clinical Practice
Clinician Viewpoint
Patient Viewpoint
Healthcare Information Technology Aspect
Healthcare System Aspect
Summary
Review Questions
Answer Key
References
Part IV: Ethics, Bias, Privacy, and Fairness
Chapter 20: Personal Health Informatics Services and the Different Types of Value they Create
Introduction
Values
Evidence
Insight
Mindset
Knowledge
Attitude and Emotion
Behavior
Power
Discussion
The Roles of Personal Health Informatics in the Medical Industry
Assets beyond Insight
Mindset
Power and the Whole Picture
Learning Objectives
Review Questions
Clinical Pearls
References
Chapter 21: Electronic Health Records: Ethical Considerations Touching Health Informatics Professionals
Introduction
Ethics Preamble
Ethical Considerations for HIPs
Patients
Health Care Professionals and Institutions
Implications of Modern Health Care
Privacy Considerations
Precision Medicine
Expert Systems and Artificial Intelligence
Conclusion
Review Questions
Answers
References
Chapter 22: Healthcare Organizations as Health Data Fiduciaries: An International Analysis
Introduction
Monetization of Health Data
How Health Data Is Maintained by Healthcare Organizations
The Expansion of Healthcare Technology
The Right to Be Forgotten
The Threat of Cybercrime
Fiduciary Relationships in the Field of Healthcare
The Fiduciary Relationship Between Medical Provider and Patient
The Fiduciary Relationship Between Healthcare Organizations and Patients
The Fiduciary Duty of a Healthcare Organization to Maintain Health Data
National Health Data Privacy & Security Laws
The United States of America
The European Union
Canada
Mexico
Brazil
Argentina
South Africa
Uganda
Japan
South Korea
Philippines
Russia
People’s Republic of China
India
Australia
A Closing Look at International Health Data Legal Frameworks
Conclusion
References
Chapter 23: Ethical, Legal, and Social Issues Pertaining to Virtual and Digital Representations of Patients
Introduction
Quality of Care
Benefits of Virtualization
Virtualization Reduces Distinctions Between Illness and Health, and Between Individuals
Virtualization Reduces Knowledge of the Patient and Patient’s Body
Virtualization Shifts Locus of Care, Decontextualizes Data, Compromises Care
Virtualization Threatens Personhood and Autonomy
Lack of Transparency About Data, Algorithms, and Proxies Threatens Quality of Care
Predictions Affect Quality of Care
Make Personalization Personal
Privacy
Anonymity Is Impossible
Lack of Consent
Potential Harms
Bias and Fairness
Encoding Bias
Access Disparities Lead to Care Disparities
Biases in Data
Remedies and Frameworks
ELSI Framework for Evaluation and Ethical Analysis
Multidisciplinarity
Conclusion
Healthcare is About Different People, with Bodies
References
Index