Introduction

Every day millions of people enter hospitals, ambulatory care centers or clinics and assume the role of “patient”. This can be a scary transition – entering the healthcare system can create enormous fear and uncertainty, and often requires relinquishing control. Many patients may not understand their diagnoses, or the risks of the care they are about to receive. Yet it is increasingly clear that patients have better experiences and outcomes and often use less healthcare resources when they understand more about their diseases and care, especially when they are empowered to and responsible for managing it.

This book, Information Technology for Patient Empowerment in Healthcare, is about engaging patients and their families in new and innovative ways to support the management of their own health. This takes place in the context of the recent revolution in health information technology (HIT) – we have gone from living without HIT to using it routinely. However great our progress, the systems of today do not yet come close to leveraging the full potential of HIT to engage patients. In this book, leading figures in this area present their perspectives on how this can be accomplished. This will involve enabling patients and family members to participate actively in their care, to self-manage their medical problems and to improve communication with their healthcare providers by using patient-facing HIT tools. These tools, which range from personal health records to mobile applications, among many others, enable health-care providers to partner with their patients, and together, build care regimens that optimize quality of care and health outcomes. They have the potential to help each of us – as we all eventually make this transition to being a patient – to have more control in an inherently vulnerable position, and to make better decisions about our health and well-being; about our destiny.

We attempt to keep the patient and family experience and voice at the center of the conversation about HIT’s role in patient engagement and empowerment by weaving together the perspectives of multiple key stakeholders on the various tools and aspects of this emerging domain. Linked through the thread of facilitating patient empowerment, this book consists of contributions from patients, family members and patient advocates who discuss their experiences, expectations, satisfactions and frustrations with health care delivery; renowned clinicians, healthcare organization leaders and top industry managers who advocate for a new generation of patient-centered technologies; policymakers who play a central role in shaping healthcare reform; researchers from major universities around the world who propose and test cutting-edge technologies for patient care; and information technology experts who have crafted practical solutions to real patient needs. Together, these perspectives paint a picture of care that is being transformed by HIT, leading to greater patient engagement, empowerment and, ultimately, to improved quality of care and better clinical outcomes.

This book tells its story in two parts. The first part of the book aims to provide a 360 degree perspective on information technology for patient empowerment by incorporating the diverse perspectives of patients and their family members, clinicians, researchers, healthcare organization leaders, HIT industry mangers and policymakers.

The first five chapters of this book provide in-depth presentations of the transformation of patient and clinician behavior and interaction, evolution of patient-centered care and patient engagement, healthcare services activities, industry strategies, the role of the media and policy regulations in the information technology age. Thus, this part takes a critical view of the existing needs, challenges and opportunities for improving patient empowerment and engagement through HIT, mapping out what has been accomplished and what work remains to truly transform the care we deliver and engage patients in their care. This part provides the backdrop for the second half of the book.

The remainder of the book covers the primary current and future information technology solutions for patient empowerment through specific HIT case studies. This section discusses information techniques to further personalize the access to health-care data through patient portals; secure and scalable systems to support patients’ needs for ownership, control and sharing of health information; information retrieval and natural language processing methodologies to improve health literacy and education; electronic informed consent approaches for enhancing patients’ decision making processes; mobiles, kiosks and web-based technologies to support self-care management; and patient-reporting healthcare outcomes systems, among other functions. Each of these 10 chapters explores the existing gaps, strengths, weaknesses and potential implications of these practical solutions to real patient problems. This collection of timely case studies introduces the reader to a wide perspective on the direction patient empowerment technologies are headed.

Patients have never previously been so empowered to shape their own health care. Patient engagement and empowerment via HIT appear destined to become of major value to both the public and healthcare organizations. Thus, in 10 years, the question may not be if and how to empower patients via HIT, but how we ever lived without these tools. We think this book is unique in its focus on the intersection between HIT and patient engagement and empowerment, and believe that it represents a timely and significant contribution to the literature in this field. We hope that it will be of value to policymakers, healthcare providers and administrators, consultants and industry managers, researchers and students and, not least, to patients and their family members.