Health Informatics (

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Health Informatics

( formerly Computers in Health Care)

Kathryn J. Hannah Marion J. Ball

Series Editors

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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

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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.

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) 9 8 7 6 5 4 3 2 1 SPIN 10942871 springeronline.com

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To Emme and MeiMei

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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

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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 circum- stances 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 communication 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]. For the most part, this information is presented in a didactic, non-interactive manner, but I am conﬁdent that more and more interactive programs will be available to address the viii Foreword

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individual needs of patients who use them. Increasingly, patients communicate with each other as well as with their clinicians by electronic mail [1,6]; and although cur- rently limited to a few clinical practices, secure Web sites are now available that give patients a means to view their medications; request prescriptions, appointments, and referrals; view upcoming appointments; and view the results of their diagnostic studies [18–23]. Further, it should now be possible to deliver to people in their homes, interactive interviews that obtain their medical histories and incorporate the results of these interviews into their electronic medical records, readily available both to patient and clinician [6].

I am conﬁdent that the “digital divide” will continue to narrow, that the Internet will continue to become democratized as well as democratizing, available to more and more people from all walks of life, and that consumer informatics will improve the quality of medical care. This excellent collection of thoughtful, informative, and thought- provoking chapters shows that this process is already well underway.

Warner V. Slack, MD Professor of Medicine, Harvard Medical School Co-Director, Division of Clinical Computing, Department of Medicine Beth Israel Deaconess Medical Center November 23, 2004

References

1. Slack WV. Cybermedicine: how computing empowers doctors and patients for better health care (revised and updated edition). San Francisco: Jossey-Bass, 2001.

2. Slack WV, Safran CS, Kowaloff HB, Pearce J, Delbanco TL. A computer-administered health screening interview for hospital personnel. MD Comput 1995;12:25–30.

3. Slack WV. Patient-computer dialogue and the patient’s right to decide. In: Brennan PF, Schneider SJ, Tornquist E, eds. Computers in health care: information networks for community health. New York: Springer-Verlag, 1997;55–69.

4. Slack WV. Patient power: a patient-oriented value system. In: Jacques JA, ed. Computer diagnosis and diagnostic methods. Proceedings of the Second Conference on the Diagnostic Process held at the University of Michigan. Springﬁeld, IL: Charles C. Thomas, 1972;3–7.

5. Slack WV. The patient’s right to decide. Lancet 1977;2:240.

6. Slack WV. A 67-year-old man who e-mails his physician. JAMA 2004;292:2253–61.

7. Shaw GB. Man and Superman: A Comedy and Philosophy. Baltimore: Penguin; 1952.

(Originally published 1903)

8. Slack WV, Hicks GP, Reed CE, Van Cura LJ. A computer-based medical history system. N Engl J Med 1966;274:194–8.

9. Clark WA, Molnar CE. The LINC: a description of the laboratory instrument computer. Ann NY Acad Sci 1964;115:653–68.

10. Kafka F. The Castle. A new translation based on the restored text (M. Harman, trans). New York: Schocken Books, 1998.

11. Koestler A. Darkness at Noon (D. Hardy, trans). New York: Macmillan, 1987.

12. Slack WV. Patient-computer dialogue: a review. In: van Bemmel JH, McCray AT, eds. Year- book of medical informatics 2000: patient-centered systems. Stuttgart, Germany: Schattauer, 2000;71-8.

13. Slack WV, Van Cura LJ. Patient reaction to computer-based medical interviewing. Comput Biomed Res 1968;1:527–31.

14. Lucas RW, Mullin PJ, Luna CB, McInroy DC. Psychiatrists and a computer as interrogators of patients with alcohol-related illnesses: a comparison. Br J Psychiatry 1977;131:160–7.

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15. Locke S, Kowaloff HB, Hoff RG, et al. Computer-based interview for screening blood donors for risk of HIV transmission. JAMA 1992;268:1301–5.

16. Bachman JW. The patient-computer interview: a neglected tool that can aid the clinician.

Mayo Clin Proc 2003;78:67–78.

17. HarrisInteractive. No signiﬁcant change in the number of “Cyberchondriacs”—those who go online for health care information. Health Care News 2004. Available at http://www.

harrisinteractive.com/news/newsletters/healthnews/HI_HealthCareNews2004Vol4_Iss07.pdf.

Accessed November 24, 2004.

18. Sands DZ, Halamka JD. PatientSite: patient centered communication, services, and access to information. In: Nelson R, Ball MJ, eds. Consumer informatics: applications and strategies in cyber health care. New York: Springer-Verlag, 2004.

19. Gray JE, Safran C, Davis RB, et al. Baby CareLink: using the internet and telemedicine to improve care for high risk infants. Pediatrics 2000;106:1318–24.

20. Wald JS, Pedraza LA, Reilly CA, et al. Requirements for the development of a patient computing system. Proc AMIA Symp 2001;731–5.

21. Tang PC, Black W, Buchanan J, et al. Proc AMIA Symp 2003;649-53.

22. Department of Veterans Affairs. My HealtheVet. Available at http://www.myhealthevet.va.

gov/ShowDoc/MHV/help/faq.htm#q1. Accessed March 22, 2004.

23. Earnest MA, Ross SE, Wittevrongel L, et al. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc 2004;11:410–17.

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Series Preface

This series is directed to healthcare professionals who are leading the transformation of health care by using information and knowledge to advance the quality of patient care. Launched in 1988 as Computers in Health Care, the series offers a broad range of titles: some are addressed to speciﬁc professions such as nursing, medicine, and health administration; others to special areas of practice such as trauma and radiology.

Still other books in the series focus on interdisciplinary issues, such as the computer- based patient record, electronic health records, and networked healthcare systems.

Renamed Health Informatics in 1998 to reflect the rapid evolution in the discipline now known as health informatics, the series continues to add titles that contribute to the evolution of the field. In the series, eminent experts, serving as editors or authors, offer their accounts of innovation in health informatics. Increasingly, these accounts go beyond hardware and software to address the role of information in influencing the transformation of healthcare delivery systems around the world. The series also increasingly focuses on “peopleware” and the organizational, behavioral, and societal changes that accompany the diffusion of information technology in health services environments.

These changes will shape health services in the new millennium. By making full and creative use of the technology to tame data and to transform information, health informatics will foster the development of the knowledge age in health care. As coeditors, we pledge to support our professional colleagues and the series readers as they share the advances in the emerging and exciting ﬁeld of health informatics.

Kathryn J. Hannah Marion J. Ball

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Preface

xiii As a parent, I recently became personally aware of the importance of consumer health informatics. After a frightening trip to the hospital with an unconscious child, I was told that her EEG was “very abnormal” and that she had a seizure disorder.

Other words followed but they didn’t get processed. I only heard abnormal EEG and seizure disorder. Before I could think of any questions to ask, the neurology team was gone.

Within minutes, the parade of “what ifs” began in my mind. I asked to speak to the doctors who had examined my daughter, but they had moved on to another hospital unit. A nurse paged the fellow, who said she would return to talk to me. I waited several hours and found myself entertaining more questions, and especially wishing I could remember the name of the drug they were going to be giving my daughter.

I decided to walk across the street to my ofﬁce to check the Internet. I thought a quick search would give me some of the answers I needed. Knowing to look only at a

“trusted site,” I went directly to a national organization for persons with epilepsy. I clicked on the link for answers to questions and then on the link entitled “Children”.

My eyes were drawn to the bulleted points on the right side of the page:

• “300,000 children have seizures”

• “there are different types of seizure disorders”

• “many children feel loss of self-esteem and social isolation”

Further exploration of the same Web site led me to a page that discussed driving restric- tions for persons with epilepsy. I couldn’t help but think about how my bright ﬁve-year old daughter’s life was going to be impacted by this diagnosis.

I did not quickly see a link to medication information so I left this Web site and searched using the keywords epilepsy, medication, and children. There were many hits.

One of the ﬁrst was for an attorney who assists parents whose children have been injured by seizure medications. I ultimately returned to the hospital an even more anxious parent.

With the passing of time, fear started to overtake my usual rational pattern of thought. I talked to a staff nurse and asked her how my daughter’s life would be changed by epilepsy? Would my ﬁve-year old be injured by the medication? Would she become dysfunctional? Would she still be permitted to attend school?

The considerate answers she gave me based on her experience, really helped reas- sure me. A pediatric resident soon joined us, and I asked him the same questions. He provided the same calm reassurance. That night, the resident and the unit nurse helped me process the small amount of information I had and helped me move forward to

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more rational thinking. I still had many questions but now they were practical and based on my daughter’s unique situation.

As my information needs changed, I was better able to focus my Internet search.

I found wonderful support and answers in BrainTalk Communities, which is part of the Massachusetts General Hospital, Department of Neurology Web resources (http://adams.mgh.harvard.edu/NISRDG/#ptweb).

As I consider my experience of that day, I am aware that people seek information from a variety of resources and use many different approaches to process information.

I am also aware that when faced with a crisis it is difﬁcult to separate intellectual questions from situational emotions. My own experience has taught me to think differently about the role of the care provider and how important high-quality, accessible information resources are for healthcare consumers in times of crisis. The Internet is a powerful resource when it provides access to accurate and personally meaningful information. There are situations when a conversation with a healthcare provider is the best resource, but that is not always possible in today’s healthcare environment.

As a developer of consumer health information resources, I am convinced that we must create new consumer-provider communication paradigms that capitalize on the strengths of information technologies to meet the needs of individual healthcare consumers. The designers of healthcare Web sites need to work with knowledgeable consumers and healthcare providers to ensure that high-quality information is thoughtfully presented. I also believe that clear, direct, and hopeful messages should be brought forward to prominent placement on Web sites for healthcare consumers who are seeking information in times of crisis. We have a wonderful opportunity to build resources to meaningfully help people process information when they need it most.

These chapters present information that represents the current science of consumer health informatics and provide examples of model programs that seek to build new information sharing strategies. As professional organizations and consumer health working groups make important contributions to consumer health informatics, the growing library of literature will help shape the ﬁeld. A number of healthcare informatics’ educational programs have integrated consumer health informatics content, and governmental agencies have set agendas that promote research and development in this ﬁeld.

Through the chapters that follow the reader will gain insights into the deﬁnitions for consumer health and health informatics through theory-based approaches. “Best- practice” strategies for development and evaluation, and model initiatives in consumer health informatics are presented. The text includes authors and editors from interdisciplinary backgrounds who have presented, as fully as possible, the depth and breadth of consumer health informatics expertise. We are fortunate to have the knowledge and expertise that they provide in the pages that follow.

I have shared my own experience to illustrate the importance of access to high- quality, individualized information that is available in an environment of consumer- provider information-sharing, as well as the importance of including the consumer in the design and development process. We have much to gain by the efforts of so many who are researching, teaching, and living the experience of access to consumer health information. It is my hope that the wonderful contributions made in this book will lead to greater insights and produce more research to strengthen and guide the science of consumer health informatics.

Deborah Lewis, EdD, RN, MPH xiv Preface

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Acknowledgments

We thank our family and friends who contribute their time and enduring patience for our careers.

We thank our colleagues who have contributed to this text and to the ﬁeld of Consumer Health Informatics.

We thank Michelle Schmitt, Marion Ball, and Springer for making this work a reality.

We acknowledge the healthcare consumer, and the patients, and family members, who use Consumer Health Informatics resources daily to seek answers.

We remember Rob Kling for his invaluable contribution to the ﬁeld of Social Infor- matics.

Deborah Lewis, EdD, RN, MPH Gunther Eysenbach, MD, MPH Rita Kukafka, DrPH, MA, CHES P. Zoë Stavri, MLS, PhD Holly B. Jimison, PhD

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Contributors

Richard Appleyard, PhD

Associate Professor, Department of Medical Informatics and Clinical Epidemiology, Web Services Manager, Information Technology Group, Oregon Health & Science University, Portland, OR, USA

Joyce E.B. Backus

Lead, Web Management Team, Public Services Division, National Library of Medicine, Bethesda, MD, USA

Haile Berhe

Lead Programmer, CHESS Project, Center for Health Systems Research and Analy- sis, University of Wisconsin-Madison, Madison, WI, USA

Eric W. Boberg

CHESS Project, University of Wisconsin-Madison, Madison, WI, USA

Patricia Flatley Brennan, RN, PhD

Lillian Moehlman-Bascom Professor of Nursing, Professor, Industrial Engineering, University of Wisconsin, Madison, WI, USA. E-mail: pbrennan@engr.wisc.edu

Betty L. Chang, DNSc, FNP, FAAN

Professor Emerita, UCLA School of Nursing, University of California, Los Angeles, CA, USA

James J. Cimino, MD

Professor of Biomedical Informatics and Medicine, Columbia College of Physicians and Surgeons, New York, NY, USA

Gunther Eysenbach, MD, MPH

Senior Scientist, Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research, Toronto General Research Institute of the UHN;

Associate Professor, Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

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Charles P. Friedman, MS, PhD

Professor of Medicine, Director of the Center for Biomedical Informatics, Director of the Pittsburgh Biomedical Informatics Training Program, University of Pittsburgh, Pittsburgh, PA, USA

Denise Goldsmith, RN, MS, MPH

Program Manager, Nursing Informatics, Patient Care Services/Information Systems, Beth Israel Deaconess Medical Center, Boston, MA, USA

David H. Gustafson, MS, PhD

Research Professor, Industrial Engineering, CHESS Project Director, University of Wisconsin-Madison, Madison, WI, USA

James H. Harrison, Jr., MD, PhD

Associate Professor, Department of Pathology, Faculty in Residence, Center for Bio- medical Informatics, University of Pittsburgh, Pittsburgh, PA, USA

Robert P. Hawkins

Maier-Bascom Professor, School of Journalism and Mass Communication, University of Wisconsin-Madison, Madison, WI, USA

Holly B. Jimison, PhD

Medical Informatics Investigator, KP Center for Health Research; Assistant Professor, Public Health and Preventive Medicine, Oregon Health & Science University, Portland, OR, USA

Bonnie Kaplan, PhD

Lecturer, Yale Center for Medical Informatics, President, Kaplan Associates, Hamden, CT, USA

Rita Kukafka, DrPH, MA, CHES

Assistant Professor, Mailman School of Public Health, Division of Sociomedical Sci- ences, Department of Medical Informatics, Columbia University, New York, NY, USA

Eve-Marie Lacroix, MS

Chief, Public Services Division, National Library of Medicine, Bethesda, MD, USA

Deborah Lewis, EdD, RN, MPH

Associate Professor and Coordinator, Nursing Informatics, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA

Yves A. Lussier, MD

Director, Biomedical Informatics Core, Northeast Research Center in Biodefense and Emerging Infectious Diseases; Assistant Professor, Department of Biomedical Infor- matics and Department of Medicine, Columbia University College of Physicians and Surgeons, Columbia University, New York, NY 10032, USA

Fiona McTavish, MS

Deputy Director, CHESS Project, University of Wisconsin-Madison, Madison, WI, USA

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Betta Owens, MS

Director, CHESS Research Consortium, University of Wisconsin-Madison, Madison, WI, USA

Suzanne Pingree

CHESS Project, University of Wisconsin-Madison, Madison, WI, USA

Cornelia M. Ruland, RN, PhD

Director, Center for Shared Decision Making and Nursing Research, Rikshospitalet National Hospital, Oslo, Norway

Charles Safran, MD

President, American Medical Informatics Association, Associate Clinical Professor of Medicine, Harvard Medical School, Chairman and CEO, Clinician Support Technol- ogy, Newton, MA, USA

Daniel Z. Sands, MD, MPH, FACMI

Assistant Clinical Professor of Medicine, Harvard Medical School, Chief Medical Ofﬁcer and VP of Clinical Strategies, Zix Corporation, Center for Clinical Computing, Beth Israel Deaconess Medical Center, Boston, MA, USA

Steve Sawyer, BS, MS, MD, DBA

Associate Professor, School of Information Sciences and Technology, Pennsylvania State University, University Park, PA, USA

Roy Schoenberg, MD, MPH

President, CareKey Incorporated, Boston, MA, USA

Catherine Arnott Smith, PhD

Assistant Professor, School of Information Studies, Center for Science and Technology, Syracuse University, Syracuse, NY, USA

P. Zoë Stavri, MLS, PhD

Assistant Professor, Oregon Health & Science University; Visiting Assistant Professor, part-time, Health Sciences Informatics, SOM, JHU, Chambersburg, PA, USA

Meg Wise, PhD

Center for Health Systems Research and Analysis, University of Wisconsin, Madison, WI, USA

Contributors xxi

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