Table Of ContentDigital Health and
Patient Data
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.
Digital Health and
Patient Data
Empowering Patients in the
Healthcare Ecosystem
Disa Lee Choun
and
Anca Petre
First published 2023
by Routledge
605 Third Avenue, New York, NY 10158
and by Routledge
2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2023 Disa Lee Choun & Anca Petre
The right of Disa Lee Choun & Anca Petre to be identified as authors of this work
has been asserted by them in accordance with sections 77 and 78 of the Copyright,
Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilized in any form or by any electronic, mechanical, or other means, now known
or hereafter invented, including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered
trademarks, and are used only for identification and explanation without intent to
infringe.
Library of Congress Cataloging-in-Publication Data
A catalog record for this title has been requested
ISBN: 9781032105567 (hbk)
ISBN: 9781032105543 (pbk)
ISBN: 9781003215868 (ebk)
DOI: 10.4324/9781003215868
Typeset in Garamond
by SPi Technologies India Pvt Ltd (Straive)
To the patients that never give up and continue to demand for
better treatment and care.
To our friends and peers for believing in us.
To our families for their unconditional support.
Contents
Foreword ......................................................................xi
Preface ....................................................................... xvii
Acknowledgements...................................................xxiii
Notes on the Authors ............................................... xxvii
1 The Patient Empowerment Movement .....................1
From a Doctor-Centred Model to a Patient-Centred Model ....2
Setting Rights, Sharing Knowledge, Defining New Rules .........8
The First Patient Movements .....................................8
Reducing the Knowledge Gap ................................10
Creating a New Doctor–Patient Relationship
Framework .....................................................15
Reaching the Mutual Participation Model ...............17
From Informed Patients to e-Patients ......................22
Equipping e-Patients ................................................23
e-Patients Break the Status Quo ..............................27
From Health Literacy to eHealth Literacy:
Opportunities and Challenges ......................30
The Complex World of Health Data .......................34
Notes .........................................................................................36
2 From Raw Data to Insights ....................................43
Overview of Health Data Types and Sources .........................44
Electronic Health Records: The Main Source of
Health Data ....................................................44
vii
viii ◾ Contents
Medical Data Is Not Sufficient to Understand the
Human behind the Patient ............................47
What Is Big Data and Where Does All This Data
Come From? ...................................................48
What Are the Key Steps in the Data Value Chain? ..................50
What Is Raw Data? ...................................................50
What Is Value Data? .................................................51
Who Are the Key Players? .........................................................57
Where Do the Patients Come In? .............................................58
What Are Some of the Challenges of This Value Chain? ........60
#1 Trust .....................................................................61
#2 Inequalities ..........................................................61
#3 Heterogeneous and Multi-Dimensional .............62
#4 Autonomous Sources with
Distrusted Control..........................................62
#5 Complex and Evolving Relationship ..................62
#6 Skilled People ......................................................63
Addressing the Obstacles of Big Data in Healthcare ..............63
Storage ......................................................................63
Governance ..............................................................64
Interoperability .........................................................64
Security and Privacy .................................................66
Where Does Ethics Play a Key Part? .......................69
Open Data, FAIR, and TRUST Principles .................................71
What Is the Right Type of Data Governance? ........75
What Standards Are Needed? ..................................75
What Should the Health Data Value Chain Look Like in the
Future? ..............................................................................78
What Is the Patient Data Ecosystem? ......................78
Notes .........................................................................................80
3 The Value of Health Data for Patients ...................85
How Do Patients See Their Health Data? ................................85
Patients Are Overall Open to Sharing
Their Data… ..................................................85
…although They Understand the Risks ..................87
Principles of Safe Data Sharing ................................................90
Contents ◾ ix
Whose Data Is It Anyway? ........................................................93
Own Your Data to Keep It Private ...........................................95
The Shared Ownership Governance Model ...........97
The Social Licence to Use Data ...............................98
Trusted Environments ..............................................99
Patients Are Not Cash Cows ...................................................101
The Social Vision.....................................................................103
Tech to the Rescue ..................................................................104
Blockchain, a Tool for a Shared Ownership
Governance Model ......................................104
Health Data as NFTs ..............................................107
Privacy-Preserving Technologies ...........................109
Advancing with Purpose .........................................................110
Notes .......................................................................................115
4 Applications of Health Data.................................117
Applications of Health Data ...................................................118
Why Is It Important? ..............................................118
Researcher ..............................................................121
Disease Identification and Diagnosis .....................................121
Digital Therapeutics ................................................................124
Personalized Treatment ...........................................................124
Drug Discovery .......................................................................125
Clinical Trials ...........................................................................126
Comorbidities ..........................................................................128
Society (Healthcare System) ..................................129
Hospital Performance, Planning and Management ...............129
Pandemic and Epidemic .........................................................132
Improving Medical or Healthcare Services ............................133
Substance Abuse .....................................................................133
Diagnosis Using Imaging Technologies .................................134
Training Physicians and All Healthcare Providers .................135
Insurance .................................................................................136
Patient Engagement ................................................................136
Citizen (Patients) ....................................................137
Improve Disease Management, Quality of Life, Health,
and Wellness ..................................................................138
Preventing Medication or Treatment Errors ...........................140
Early Diagnosis of Potential Disease ......................................141
