Health Informatics (Formerly Computers in Health Care) Kathryn J

Health Informatics (formerly Computers in Health Care) Kathryn J. Hannah Marion J. Ball Series Editors Deborah Lewis Gunther Eysenbach Rita Kukafka P. Zoë Stavri Holly B. Jimison Editors Consumer Health Informatics Informing Consumers and Improving Health Care With 28 Illustrations With a Foreword by Warner V. Slack Deborah Lewis, EdD, RN, MPH Gunther Eysenbach, MD, MPH Associate Professor and Coordinator Senior Scientist, Centre for Global eHealth Innovation Nursing Informatics Division of Medical Decision Making and Health Care University of Pittsburgh School Research of Nursing Toronto General Research Institute of the UHN Pittsburgh, PA 15261 and USA Associate Professor Department of Health Policy Management and Evaluation University of Toronto Toronto, ON M5G 2C4 Canada Rita Kukafka, DrPH, MA, CHES P. Zoë Stavri, MLS, PhD Holly B. Jimison, PhD Assistant Professor Assistant Professor Medical Informatics Investigator Mailman School of Public Health Oregon Health & Science KP Center for Health Research Division of Sociomedical Sciences University and Department of Medical Informatics and Assistant Professor Columbia University Visiting Assistant Public Health and Preventive New York, NY 10032 Professor, part-time Medicine USA Health Sciences Oregon Health & Science Informatics, SOM, JHU University Chambersburg, PA 17201 Portland, OR 97227-1110 USA USA Series Editors: Kathryn J. Hannah, PhD, RN Marion J. Ball, EdD Adjunct Professor, Department of Vice President, Clinical Informatics Strategies Community Health Science Health Sciences Informatics, SOM, JNU Faculty of Medicine Chambersburg, PA 17201 The University of Calgary Healthlink, Inc. Calgary, Alberta T2N 4N1 Baltimore, MD 21210 Canada and Adjunct Professor The Johns Hopkins University School of Nursing Baltimore, MD 21205 USA ISBN 0-387-23991-X Printed on acid-free paper. © 2005 Springer Science+Business Media, Inc. All rights reserved. This work may not be translated or copied in whole or in part without the written permission of the publisher (Springer Science+Business Media, Inc., 233 Spring Street, New York, NY 10013, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden. The use in this publication of trade names, trademarks, service marks, and similar terms, even if they are not identified as such, is not to be taken as an expression of opinion as to whether or not they are subject to proprietary rights. While the advice and information in this book are believed to be true and accurate at the date of going to press, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omis- sions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed in the United States of America. (BS/MVY) 987654321 SPIN 10942871 springeronline.com To Emme and MeiMei Foreword In Consumer Health Informatics, Deborah Lewis and her fellow editors have assem- bled a group of clinicians and scientists eminently qualified to enlighten all those inter- ested in clinical computing. I have long believed that patients represent the largest yet least well-utilized healthcare resource, and that the interactive computer can help clinicians to better understand their patients even as it empowers patients to take greater control of their own medical destinies [1,2]. It is my honor and pleasure, therefore, to add a few words of foreword to this welcome book. I had the good fortune to spend the 1960s at the University of Wisconsin. In this wonderful atmosphere of progressive ideology and strong social conscience, two lines of reasoning evolved in my mind [1,3]. The first led to a set of controversial ideas I called “patient power,” arguing that patients should be encouraged to participate as partners with their clinicians in medical decisions [4,5]. Further, I proposed that patients and clinicians alike would benefit if medical records were declassified, shared, and developed jointly by patient and clinician, and that words, such as “order” and “comply,” would be better dropped from the medical lexicon and replaced with words that communicated a more collaborative process [4–6]. For centuries, the medical pro- fession had perpetrated paternalism as an essential component of patient care, thereby detracting from what patients could contribute to the quality of their medical care and depriving them of the self-esteem that comes from mutual respect and self-reliance. The assumption was that “doctor knows best.” Patient power questioned this. As Shaw once wrote, “Do not do unto others as you would that they should do unto you. Their tastes may not be the same” [7]. My second line of reasoning was that the computer could be used wisely and well in the practice of medicine. As with patient power, the idea was controversial, and those of us who were entering this new field were confronted by concerns about the computer in medicine under any circumstances. Would modern times destroy the art of medicine? Would these machines result in the disempowerment that had been associ- ated with the industrial revolution? Yet, contrary to prevailing concerns, the computer in our laboratory instead offered the opportunity to empower the patient [1]. My colleagues and I had the idea that we could program a computer to interact directly with the patient, to engage in meaningful dialogue, to explore medical problems in detail, and to do so in a personalized, dignified, and considerate manner. There was a theoretical reason for pursuing this. Could the computer model the clinician as interviewer? But there were practical reasons as well. We hoped the interactive computer would help clinicians in the care of their patients; that using the computer would be interesting, perhaps even enjoyable for the patient; and in the back of our minds vii viii Foreword was the idea that the computer might actually help patients to help themselves with their medical problems. We began with a computer-based history of allergies [8]. Our first patient, selected by a tired intern who had been up all night and to some extent liked the idea of being replaced by a computer, was also the most informative. He sat down at the LINC computer, borrowed from Neurophysiology [9]; the tapes churned and “HAVE YOU EVER HAD HIVES?” appeared on the screen. The characters flickered—the LINC was very slow by today’s standards—lights on the console flashed on and off, and the speaker emitted an eerie, high-pitched sound. On the other side of a Sheetrock parti- tion, people were walking in and out, and a cat was meowing. It was reminiscent of Kafka’s Castle [10] or Koestler’s Darkness at Noon [11]—clearly, not optimal circumstances for any medical interview, let alone one conducted by a computer [1]. Yet our patient quickly became engaged, and soon it was clear that rapport had been established between man and machine. He laughed out loud at some of the comments; and he talked to the computer, sometimes in praise and sometimes in criticism. For the first time as a patient, he was in control. Later, when the Teletype began to print his summary, in a legible but otherwise traditional format, he turned and asked, “May I read that?” and there, in a break with tradition, I encouraged him to read his record; and as he read, he discovered errors that needed correction. The computer as an interviewer had been, and would continue to be in our experience, an acceptable means to share the medical record at a time when the shared record was controversial and re- sisted in the traditional setting [1,6]. Here was patient power at work. With subsequent computer-based medical histories, and later with programs designed to help patients to help themselves, we did our best to yield further control to the patient—to request permission to proceed, to respect the patient’s priorities, to respect the right to decide and not to decide, to help with uncertainty, and to respect reluctance to respond—and patients were consistent in their praise of this approach [12]. Concern about the computer as a negative, depersonalizing influence proved to be unfounded; most patients found their experience to be interesting, enjoyable, and informative; and in our experience, corroborated by others, patients often found it easier to communicate with the computer about potentially embarrassing matters than to communicate the same information to their doctor [13-15]. Furthermore, when we designed the computer-printed summaries with the patient as well as the clinician in mind, patients, who were eager to read their summaries, helped us, not only to correct errors of commission and omission, but also to remove offensive wording. Over the years, numerous studies have demonstrated that dialogue between patient and computer—well received by patient and clinician—has the potential to yield com- prehensive interviews on a wide variety of medical and psychological problems [16]. Still, as a practical matter it has been hard for clinicians’ offices to provide the computers, protected space, and administrative overhead required for these interviews. Computing for the patient, for interviews, for health-related information, and for a wide variety of other purposes, needed a new technology. This came with the advent of the Internet and the increasing availability of PCs with access to the Internet. And now, Consumer Informatics, as presented so ably in this book, is a burgeoning field. Patients and prospective patients can now participate in their health care over the Internet from the privacy of their homes; and they are availing themselves of this electronic com- munication in great numbers.According to a recent survey,well over 100 million people in the United States turn to the Internet for health related information [17].

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