Personal Health Informatics: Patient Participation in Precision Health (Cognitive Informatics in Biomedicine and Healthcare)

This book clarifies consumer and personal health informatics and their relevance to precision medicine and healthcare applications. Personal Health Informatics covers a broad definition of this emerging field, with individuals not simply consuming health but as active participants, researchers and designers in the healthcare ecosystem. The world of health informatics is constantly changing given the ever-increasing variety and volume of health data, care delivery models that shift from fee-for-service to value-based care, new entrants in the ecosystem and the evolving regulatory decision landscape. These changes have increased the importance of the role of patients in research studies for understanding work processes and activities, and the design and implementation of health information systems. Therefore, personal health informatics now provide research tools and protocols to engage within individual contexts when developing solutions, which can improve clinical practice, patient engagement and public health. Personal Health Informatics offers a snapshot of this emerging field, supported by the methodological, practical, legal and ethical perspectives of researchers and practitioners. In addition to being a research reader, this book provides pragmatic insights for practitioners in designing, implementing and evaluating personal health informatics in healthcare settings. It represents an excellent reader for students in all clinical disciplines and biomedical and health informatics to learn from the case studies provided in this emerging field. 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