Consumer Health Informatics: Informing Consumers and Improving Health Care

275 Pages·2005·1.986 MB·English

by  Deborah Lewis EdD, RN, MPH, Betty L. Chang DNSc, FNP, FAAN (auth.), Deborah Lewis EdD, RN, MPH, Gunther Eysenbach MD, MPH, Rita Kukafka DrPH, MA, CHES, P. Zoë Stavri MLS, PhD, Holly B. Jimison PhD (eds.)

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.
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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 cli-
nicians 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 com-
puter 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 prob-
lems 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 com-
puter 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 com-
puter, 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 inter-
viewer 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 com-
puters, 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].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
Foreword ix
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,inter-
active 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
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diagnosis and diagnostic methods.Proceedings of the Second Conference on the Diagnostic
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7. Shaw GB. Man and Superman: A Comedy and Philosophy. Baltimore: Penguin; 1952.
(Originally published 1903)
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York:Schocken Books,1998.
11. Koestler A.Darkness at Noon(D.Hardy,trans).New York:Macmillan,1987.
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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.
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Accessed November 24,2004.
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cyber health care.New York:Springer-Verlag,2004.
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gov/ShowDoc/MHV/help/faq.htm#q1.Accessed March 22,2004.
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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 infor-
matics 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
xi