Digital Health and Patient Data : Empowering Patients in the Healthcare Ecosystem

Patients with unmet needs will continue to increase as no viable nor adequate treatment exists. Meanwhile, healthcare systems are struggling to cope with the rise of patients with chronic diseases, the ageing population and the increasing cost of drugs. What if there is a faster and less expensive way to provide better care for patients using the right digital solutions and transforming the growing volumes of health data into insights? The increase of digital health has grown exponentially in the last few years. Why is there a slow uptake of these new digital solutions in the healthcare and pharmaceutical industries? One of the key reasons is that patients are often left out of the innovation process. Their data are used without their knowledge, solutions designed for them are developed without their input and healthcare professionals refuse their expertise. This book explores what it means to empower patients in a digital world and how this empowerment will bridge the gap between science, technology and patients. All these components need to co-exist to bring value not only to the patients themselves but to improve the healthcare ecosystem. Patients have taken matters into their own hands. Some are equipped with the latest wearables and applications, engaged in improving their health using data, empowered to make informed decisions and ultimately are experts in their disease(s). They are the e-patients. The other side of the spectrum are patients with minimal digital literacy but equally willing to donate their data for the purpose of research. Finding the right balance when using digital health solutions becomes as critical as the need to develop a disease-specific solution. For the first time, the authors look at healthcare and technologies through the lens of patients and physicians via surveys and interviews in order to understand their perspective on digital health, analyse the benefits for them, explore how they can actively engage in the innovation process, and identify the threats and opportunities the large volumes of data create by digitizing healthcare. Are patients truly ready to know everything about their health? What is the value of their data? How can other stakeholders join the patient empowerment movement? This unique perspective will help us re-design the future of healthcare - an industry in desperate need for a change. Cover Half Title Title Page Copyright Page Dedication Table of Contents Foreword Preface Acknowledgements Notes on the Authors Chapter 1: The Patient Empowerment Movement From a Doctor-Centred Model to a Patient-Centred Model Setting Rights, Sharing Knowledge, Defining New Rules The First Patient Movements Reducing the Knowledge Gap Creating a New Doctor–Patient Relationship Framework Reaching the Mutual Participation Model From Informed Patients to e-Patients Equipping e-Patients e-Patients Break the Status Quo From Health Literacy to eHealth Literacy: Opportunities and Challenges The Complex World of Health Data Notes Chapter 2: From Raw Data to Insights Overview of Health Data Types and Sources Electronic Health Records: The Main Source of Health Data Medical Data Is Not Sufficient to Understand the Human behind the Patient What Is Big Data and Where Does All This Data Come From? What Are the Key Steps in the Data Value Chain? What Is Raw Data? What Is Value Data? Who Are the Key Players? Where Do the Patients Come In? What Are Some of the Challenges of This Value Chain? #1 Trust #2 Inequalities #3 Heterogeneous and Multi-Dimensional #4 Autonomous Sources with Distrusted Control #5 Complex and Evolving Relationship #6 Skilled People Addressing the Obstacles of Big Data in Healthcare Storage Governance Interoperability Security and Privacy Where Does Ethics Play a Key Part? Open Data, FAIR, and TRUST Principles What Is the Right Type of Data Governance? What Standards Are Needed? What Should the Health Data Value Chain Look Like in the Future? What Is the Patient Data Ecosystem? Notes Chapter 3: The Value of Health Data for Patients How Do Patients See Their Health Data? Patients Are Overall Open to Sharing Their Data... ...although They Understand the Risks Principles of Safe Data Sharing Whose Data Is It Anyway? Own Your Data to Keep It Private The Shared Ownership Governance Model The Social Licence to Use Data Trusted Environments Patients Are Not Cash Cows The Social Vision Tech to the Rescue Blockchain, a Tool for a Shared Ownership Governance Model Health Data as NFTs Privacy-Preserving Technologies Advancing with Purpose Notes Chapter 4: Applications of Health Data Applications of Health Data Why Is It Important? Researcher Disease Identification and Diagnosis Digital Therapeutics Personalized Treatment Drug Discovery Clinical Trials Comorbidities Society (Healthcare System) Hospital Performance, Planning and Management Pandemic and Epidemic Improving Medical or Healthcare Services Substance Abuse Diagnosis Using Imaging Technologies Training Physicians and All Healthcare Providers Insurance Patient Engagement Citizen (Patients) Improve Disease Management, Quality of Life, Health, and Wellness Preventing Medication or Treatment Errors Early Diagnosis of Potential Disease Reduce and Prevent Fraud Patient Engagement How to Create Incentives for Patients to Share Data Notes Chapter 5: Data-Driven and Patient-Centred Health Systems Health Data Availability and Use across the World The Swedish National Diabetes Register Israel: Data vs. Vaccine Data Sharing vs. Data Privacy Creating a Fully Digital Democracy: The Example of Estonia How France Redesigned Its Digital Health Roadmap from the Ground Up The Data-Driven Danish System Notes Afterword A Look into 2050 Index This book explores what means to empower patients in a digital world and how this empowerment will bridge the gap between science (healthcare and pharmaceutical companies), technology (life science technology companies), and patients.