Information Technology for Patient Empowerment in Healthcare

Maria Adela Grando, Ronen Rozenblum, David Bates

• Publisher: De Gruyter
• Year: 2015
• ISBN:
  9781614519553
• Edition: 1
• Topic: Technology & Engineering
• Subtopic: Electrical Engineering & Telecommunications
• Index: Technology & Engineering

Aims and Scope
Patients are more empowered to shape their own health care today than ever before. Health information technologies are creating new opportunities for patients and families to participate actively in their care, manage their medical problems and improve communication with their healthcare providers. Moreover, health information technologies are enabling healthcare providers to partner with their patients in a bold effort to optimize quality of care, improve health outcomes and transform the healthcare system on the macro-level.
In this book, leading figures discuss the existing needs, challenges and opportunities for improving patient engagement and empowerment through health information technology, mapping out what has been accomplished and what work remains to truly transform the care we deliver and engage patients in their care. Policymakers, healthcare providers and administrators, consultants and industry managers, researchers and students and, not least, patients and their family members should all find value in this book.

"In the exciting period that lies just ahead, more will be needed than simply connecting patients to clinicians, and clinicians to each other. The health care systems that will be most effective in meeting patients' needs will be those that can actually design their 'human wares' around that purpose. This book provides deep insight into how information technology can and will support that redesign."
Thomas H. Lee, MD, MSc, Chief Medical Officer, Press Ganey Associates; Professor of Medicine, Harvard Medical School and Professor of Health Policy and Management, Harvard School of Public Health

The Editors: Drs. Maria Adela Grando, Ronen Rozenblum and David W. Bates are widely recognized professors, researchers and experts in the domain of health information technology, patient engagement and empowerment. Their research, lectures and contributions in these domains have been recognized nationally and internationally. Dr. Grando is affiliated with Arizona State University and the Mayo Clinic, and Drs. Rozenblum and Bates are affiliated with Brigham and Women's Hospital and Harvard University.

Part I: Information Technology for Patient Empowerment: 360° Perspectives

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Ronen Rozenblum, Paula Miller, Disty Pearson and Ariane Marelli

1 Patient-centered healthcare, patient engagement and health information technology: the perfect storm

An integrated perspective from patients, families, clinicians and researchers

Abstract: This chapter will provide the backdrop for a volume that brings together a range of viewpoints on health information technology and patient engagement. Though few in the field would argue that engaging patients in their care is not important, few have written about patient engagement with patients, instead of about them. In this chapter, we – patients, family members, clinicians and researchers – have intentionally worked together to integrate our perspectives.

By way of background, we define information technology as the term was originally coined; we listen to a narrative from the perspective of a family member and we look at the evolution of the traditional clinical encounter into the modern era. In the second part of this chapter, we characterize patient-centered care and patient engagement in terms of a definition of concepts and describe its current status. Part three focuses on patient-facing health information technology tools that enable patient engagement and empowerment, and their potential effect on healthcare outcomes. We end our chapter with remarks on the opportune confluence of factors bringing us to this point in time. Finally, we go back to the patient’s voice to illustrate the power of social media and imagine how social networks may shape the future of our field.

We begin and end with the patient and family voice through personal narratives drawn from the authors in this chapter. This underscores the personal nature of the content of this book for us as people as we interact with the healthcare system and each of us becomes a part of this conversation at some point in our lives. We hope our readership will be as excited as we are to be at the crossroads where we find ourselves : patient-centered healthcare, patient engagement and health information technology –the perfect storm.

1.1 Background

In 1958, in the Harvard Business Review, the term “information technology” was coined in a prophetic piece entitled “Management in the 1980s”. Referring to a new technology beginning to take hold in American business, Leavitt and Thomas wrote:

The new technology does not yet have a single established name. We shall call it information technology (IT). It is composed of several related parts. One includes techniques for processing large amounts of information rapidly and it is epitomized by the high-speed computer. A second part centres around the application of statistical and mathematical methods to decision-making problems; it is represented by techniques like mathematical programming and by methodologies like operations research.^[1]

The origin of the word information, dating back to the late 14^th century, relates to the “act of informing” from Old French informacion, enformacion “information, advice, instruction”, and from Latin informationem (nominative informatio) with the meaning of “knowledge communicated”.

Almost fifty years after ‘information technology’ came into being, the term ‘health information technology’ (HIT) was defined. HIT refers to “the application of information processing, involving both computer hardware and software that deals with the storage, retrieval, sharing, and use of healthcare information, data, and knowledge for communication and decision making”. ^[2] Since then, HIT has made its mark on efforts to improve quality of care. As David Bates, a pioneer in the field of HIT wrote in 2002, “excellent information technology and high-quality health care are closely linked. All of the healthcare organizations […] are recognized as quality leaders due to excellent clinical outcomes, which have been achieved in part because of their information systems”.^[3]

The ability to become informed or to inform is one of the most significant tools empowering human evolution. That empowerment has been magnified in light of the information technology revolution that has occurred over the last 50 years. In the healthcare space, its recent impact has been magnanimous. A personal narrative helps to illustrate this profound progression:

A family member’s personal narrative:

It was 1984. My world changed forever when our first son was born, but not at all in the way I had expected. He was eight hours old when he turned very blue and was moved to the intensive care unit. The wonder of his birth turned into terror and fear for his survival. He had a severe heart defect. They started him on a new medicine that would keep him alive temporarily, but he stopped breathing and was put on a respirator. When I heard his nurse report to the receptionist that I could not see him yet, as he had suffered a “respiratory arrest”, I held onto the receptionist’s desk as the world turned black; I almost went down.

They let us hold him before he went to surgery. My husband and I held hands and held onto him in a mixture of love for our beautiful baby we had waited the last nine months for and the horror that we might never hold him again.

We sought to understand. We searched. We went to the medical library where we poured through volumes of printed material. We could find only one article about my son’s “defect”. The article began: “These poor unfortunate infants… all died”. I stopped reading. Caregivers were wonderful and provided us with a robust support system, but there were no other resources to turn to.

We were powerless, with nowhere to turn for more information and no way of understanding what my son’s heart defect would mean for his future and our life. We felt alone and terrified.

It was 2011. Twenty-seven years later, my husband was diagnosed with cancer. Once again our world stopped. But it was a different world. We searched, but this time we found. We found information. Using the web, we had access to medical papers about his cancer, the natural history of his disease, the risks and benefits of the therapeutic options, expert opinions and consensus statements. We were able to research providers. We found the internationally recognized experts and centers for his cancer. Though the terror of the diagnosis was present, we were empowered by online resources that were offered to us by the providers, enabling us to view personal health information and other educational data. My husband presented to his surgical consult with academic papers in hand and debated the pros and cons of the varied approaches with the surgeon. He was able to understand the options and discuss them with his care providers with a common understanding, an equal footing and a sense of truly shared decision-making and direction of his own care.

Between these two time points of experience as a patient’s family member, three decades expired and we witnessed the birth of the health information technology revolution. Access to online information provided us with a level of unprecedented control. Health information technology completely changed our experience and gave us a level of comfort that was not possible when our son was born.

This narrative relates a family member’s journey between two clinical encounters twenty-seven years apart; the first with the birth of a child with severe heart disease and the second with a spouse who had cancer. The difference between experiences is the result of immense progress in HIT. In parallel, the narrative reveals a fascinating, natural progression of language from ‘they’ (healthcare providers) to ‘we’ (patient, family and provider). During the time that spanned the two poles of the experience described, the author articulates the transition towards becoming part of the health-care system and, in some way, becoming part of the solution. Access to information through the use of information technology was the catalyst to that empowerment. This ultimate transition from ‘they’ to ‘we’ is the clearest illustration of patient engagement and empowerment. We now travel back in time to understand the anatomy of the complex relationship between the clinician (then, most commonly a physician) and the patient. We will demonstrate why the ‘they’ vs. ‘we’ culture has been so embedded in the medical profession’s framework.

1.1.1 Evolution of the traditional clinical encounter into the modern era

Traditionally, the clinical encounter begins when a person seeks council for an ailment. Fundamental to this encounter is the patient narrative, during which the clinician seeks to take a ‘history’. In this sense, the degree to which a clinical encounter has been ‘patient-centered’ is fairly consistent over the last 250 years.

The scientific method took root during the 17^th century’s “Age of Enlightenment” when reason began to dominate Western civilization. Until that time, ‘sickness’ was the subject of a person. In the early 1800s, however, the ‘sick man’ disappeared, replaced with a concept of ‘the patient’, at least in part due to the emergence of hospital medicine.^[4] The subject or the person thus became the object of his/her ailment. ^[5] In the latter half of the 19^th century, commentary on the role of the patient history in the process of clinical assessment was always centered on the clinician. As illustrated in a quote written by Samuel Fenwick, a prominent physician in the 1800s,^[5] a shift occurred from what the patient thought or felt to what the doctor found:

It is generally difficult for the young student to guide the patient’s account in such a way as to derive the necessary information from the details. Most persons ramble in describing their symptoms and many insist on giving their own or other persons’ opinions as to the nature of their disease, instead of confining themselves to the narration of facts.^[6]

Thus the patient’s narrative provided a source of facts to be uncovered by the skilled physician who took control of the history.^[5] While the patient sought comfort, the doctor sought information. Clinicians of the time believed that the “patient needs the physician in a way that the physician does not need the patient”.^[7] Thus, the clear difference in what the doctor and patient expected from the clinical encounter accounted for, and to some extent continues to account for, the tension that prevails in this complex relationship. This difference in expectat...

Table of contents

• Title Page
• Copyright Page
• Table of Contents
• Preface
• About the editors
• Introduction
• List of contributing authors
• Acknowledgements
• Part I: Information Technology for Patient Empowerment: 360° Perspectives
• Part II: Current and Future Information Technology Solutions for Patient Empowerment
• Index