Consumer Health Informatics: Emerging Issues (Letter Report, 07/26/96,
GAO/AIMD-96-86).
Technology has increased the amount of health information available to
the public, allowing consumers to become better educated and more
involved in their own health care. Government and private health care
organizations rely on a variety of technologies to disseminate health
information on preventive care, illness and injury management, treatment
options, post-treatment care, and other topics. This report discusses
consumer health informatics--the use of computers and telecommunications
to help consumers obtain information, analyze their health care needs,
and make decisions about their own health. GAO provides information on
(1) the demand for health information and the expanding capabilities of
technology; (2) users' and developers' views on potential systems
advantages and issues surrounding systems development and use; (3)
government involvement--federal, state, and local--in developing these
technologies; and (4) the status of related efforts by the Department of
Health and Human Services. As part of this review, GAO surveyed consumer
health informatics experts and presents their views on issues that need
to be addressed when developing consumer health information systems. GAO
summarized this report in testimony before Congress; see: Consumer
Health Informatics: Emerging Issues, by Patricia T. Taylor, Director of
Information Resources Management Issues, before the Subcommittee on
Human Services and Intergovernmental Relations, House Committee on
Government Reform and Oversight. GAO/T-AIMD-96-134, July 26 (13 pages).
--------------------------- Indexing Terms -----------------------------
REPORTNUM: AIMD-96-86
TITLE: Consumer Health Informatics: Emerging Issues
DATE: 07/26/96
SUBJECT: Government information dissemination
Health care services
Health care cost control
Computer networks
Data integrity
Consumer education
Medical information systems
Intergovernmental relations
Telecommunication
IDENTIFIER: Internet
HealthQuiz System
ComputerLink System (Cleveland, OH)
House Calls System (Cleveland, OH)
Internet Healthline System
World Wide Web
University of Wisconsin Comprehensive Health Enhancement
Support System
National Health Information Infrastructure Project
John A. Hartford Foundation Community Health Management
Information System
FortNet System (Fort Collins, CO)
HHS World Wide Web Gateway to Federal Consumer Health
Information Project
HCFA On-Line Project
******************************************************************
** This file contains an ASCII representation of the text of a **
** GAO report. Delineations within the text indicating chapter **
** titles, headings, and bullets are preserved. Major **
** divisions and subdivisions of the text, such as Chapters, **
** Sections, and Appendixes, are identified by double and **
** single lines. The numbers on the right end of these lines **
** indicate the position of each of the subsections in the **
** document outline. These numbers do NOT correspond with the **
** page numbers of the printed product. **
** **
** No attempt has been made to display graphic images, although **
** figure captions are reproduced. Tables are included, but **
** may not resemble those in the printed version. **
** **
** Please see the PDF (Portable Document Format) file, when **
** available, for a complete electronic file of the printed **
** document's contents. **
** **
** A printed copy of this report may be obtained from the GAO **
** Document Distribution Center. For further details, please **
** send an e-mail message to: **
** **
** **
** **
** with the message 'info' in the body. **
******************************************************************
Cover
================================================================ COVER
Report to the Chairman,
Subcommittee on Human Resources
and Intergovernmental Relations,
House Committee on
Government Reform and Oversight
July 1996
CONSUMER HEALTH INFORMATICS -
EMERGING ISSUES
GAO/AIMD-96-86
Consumer Health Informatics
(511187)
Abbreviations
=============================================================== ABBREV
AHCPR - Agency for Health Care Policy and Research
AIDS - acquired immunodeficiency syndrome
CDC - Centers for Disease Control and Prevention
CD-ROM - compact disc read-only memory
CHESS - Comprehensive Health Enhancement Support System
CHMIS - Community Health Management Information System
CRS - Congressional Research Service
GAO - General Accounting Office
HCFA - Health Care Financing Administration
HHS - Department of Health and Human Services
HIV - human immunodeficiency virus
NHII - National Health Information Infrastructure
NIH - National Institutes of Health
NTIA - National Telecommunications and Information Administration
ODPHP - Office of Disease Prevention and Health Promotion
Letter
=============================================================== LETTER
B-266124
July 26, 1996
The Honorable Christopher Shays
Chairman, Subcommittee on Human Resources
and Intergovernmental Relations
Committee on Government Reform and Oversight
House of Representatives
Dear Mr. Chairman:
Technology today increases the availability of health information to
the individual, allowing the consumer to become better educated and
more involved in his or her own health care. Government and private
health care organizations rely on a wide array of technologies to
disseminate health information on various topics, including
preventive care, illness and injury management, treatment options,
and post-treatment care.
In response to your request, this report presents the results of our
review of consumer health informatics--the use of modern computers
and telecommunications to support consumers in obtaining information,
analyzing their unique health care needs, and helping them make
decisions about their own health. We defined what is meant by
consumer health informatics; we then obtained data on (1) the demand
for health information and the expanding capabilities of technology,
(2) users' and developers' views on potential systems advantages and
issues surrounding systems development and use, (3) government
involvement--federal, state, and local--in developing these
technologies, and (4) the status of related efforts by the Department
of Health and Human Services (HHS). As part of this review, we
surveyed consumer health informatics experts, and present their views
on the issues that need to be addressed when developing consumer
health information systems. Experts' views were also collected at a
GAO-sponsored conference in November 1995.
RESULTS IN BRIEF
------------------------------------------------------------ Letter :1
While administrative and diagnostic hospital-based information
systems have used computer technology for over 30 years, public- and
private-sector organizations have only in the past 10 years or so
developed the capability to disseminate health information to
millions of people nationwide. Over the past decade, in fact,
several hundred new consumer health information systems--called
informatics--have been developed. Today's consumers are demanding
more--and more detailed--health information, and are taking a more
active role in making medical and lifestyle decisions.
Studies on the value of consumer health informatics have highlighted
the systems' ability to respond to consumers' information needs
quickly and efficiently, and reduce the need for some unnecessary
medical services, thereby lowering health care costs. The systems
are capable of providing many different types of information--often
customized--with which consumers can, for instance, review the pros
and cons of elective surgery or provide physicians with preoperative
health information, potentially avoiding unnecessary preoperative
tests.
Those involved in developing such systems point to additional
benefits: One informatics developer stated that an informatics
system helped doctors detect signs of alcoholism more frequently when
patients completed a computerized interview before an office visit.
(The finding was that alcoholics tended to be more honest when they
responded to a "nonjudgmental" computer than they would have been if
interviewed in person.) These tools of technology are not intended to
replace human contact with medical providers but, rather, to enhance
the usefulness of those encounters.
While recognizing that technology appears to offer a number of
promising opportunities, experts in consumer health informatics also
identified several issues--including access, cost, and information
quality--that they believe will need to be addressed to effectively
and efficiently develop, maintain, and use such systems. They also
identified options for addressing these issues, including encouraging
public- and private-sector partnerships, using the skills of an
interdisciplinary team of professionals for development, and
following sound systems development practices.
The federal government is a major disseminator of health care data,
providing information and funding to millions of Medicare and
Medicaid recipients, federal employees, and veterans. Federal
agencies also provide health information to the general public
through print, electronic, and telephone services. State and local
governments also are involved in supporting informatics projects and
providing health information on-line to citizens. While HHS and
other government agencies have developed and tested several
informatics projects, no single, comprehensive inventory of such
projects exists; the total cost of all government activities is also
unknown. HHS has, however, recently completed a report that,
according to agency officials, outlines possible future steps to
enhance health information for consumers and promote collaboration
across federal agencies.
BACKGROUND
------------------------------------------------------------ Letter :2
Hundreds of consumer health informatics systems have been developed
over the past decade and have grown in technical sophistication, from
simple programs designed in a few days to advanced clinical tools
built by teams of experts over several years. Topic content also
varies widely, including general information and advice from
physicians and nurses in areas such as nutrition, smoking cessation,
and disease management, and more individualized information tailored
to consumers' responses on health inventory questionnaires.
Individuals suffering from specific diseases or conditions get the
chance through technology to share their experiences on electronic
"bulletin boards" or "chat lines," making these experiences available
to others who may not know anyone in the same situation.
The federal government provides consumers with publications both in
writing and via computer, through such agencies as HHS' Office of
Public Health and Science, National Institutes of Health, and the
Department of Agriculture's Food and Nutrition Service. The
government also provides health and medical information through the
Internet\1 and various commercial on-line services, as well as
through clearinghouses that maintain computer databases. States and
local governments also have supported consumer health informatics and
have provided medical information and health articles via the
Internet. The private sector, too, has played a role in
disseminating health information; many health organizations,
universities, insurers, and nonprofit organizations are currently
involved in informatics projects.
--------------------
\1 The Internet connects thousands of networks to produce the world's
largest group of connected computers. These networks belong to a
variety of groups, including government bodies, universities,
businesses, local library systems, and schools. Once connected to
the Internet, a user can access databases and bulletin boards,
perform research, obtain information, print material, and participate
in on-line discussion groups.
OBJECTIVES, SCOPE, AND
METHODOLOGY
------------------------------------------------------------ Letter :3
For this review, we were asked to contact consumer health informatics
experts in both the public and private sectors to gain an
understanding of how computer and telecommunications technologies are
being used to provide health information to consumers.\2 This inquiry
included questions on the costs, potential benefits, and other issues
associated with the development and use of such systems; we also
examined federal, state, and local government and private-sector
activities that develop and/or sponsor these projects.
To address these objectives, we searched the literature to obtain and
review information on the status, development, and use of
informatics. We also contacted 80 consumer health informatics
experts representing federal and state agencies, private health
organizations, and universities. We developed a structured
questionnaire and interviewed these officials at length to learn more
about the development of consumer health informatics projects, obtain
information on the different types of technologies used, and identify
other emerging issues related to informatics. (Appendix I lists the
experts interviewed.) In addition, we gathered evaluations of
consumer health informatics projects from these experts and other
published sources, and identified reported costs and benefits of
using such technologies. Using this information and interview
results, experts identified issues related to consumer health
informatics and options that could help address them. We did not
independently evaluate these projects; rather, we are reporting the
views of the experts we interviewed. Then, in November 1995, we
convened a panel--12 of the 80 consumer health informatics
experts--to further discuss these topics. (Appendix II lists the
panelists.)
Also, we interviewed officials within HHS at the Agency for Health
Care Policy and Research, Centers for Disease Control and Prevention,
Food and Drug Administration, Health Care Financing Administration,
National Cancer Institute, National Library of Medicine, Office of
the Assistant Secretary for Planning and Evaluation, and Office of
Disease Prevention and Health Promotion. In addition, we interviewed
officials of the Departments of Agriculture, Commerce, and Defense;
the Office of Management and Budget; and the Social Security
Administration, to obtain information on the status of the Vice
President's request that HHS develop recommendations for federal
activities to provide health information to consumers.
Finally, we queried Internet users to obtain information on the
different types of health information sources available to consumers,
and the various ways that consumer health information is disseminated
through the Internet. A total of 103 Internet responses were
received and reviewed as part of our evaluation. Also, we observed
the operation of six consumer health informatics projects, and
witnessed computers and communications technologies in use providing
health information to consumers. We conducted our review from
September 1995 through April 1996, in accordance with generally
accepted government auditing standards.
--------------------
\2 We did not independently verify the information provided by these
experts.
DEMAND FOR MORE INFORMATION
HELPS DRIVE EXPANDING
CAPABILITIES OF TECHNOLOGY
------------------------------------------------------------ Letter :4
Many Americans are now requesting more health care information to
help manage, in concert with their health care providers, their own
health. The growth in the need for health information has placed
significant demand on traditional information sources. Informatics
offers a new avenue through which consumer needs for information may
be met. Consumers also have easier access to various technologies,
including personal computers, CD-ROMs,\3 and on-line services,
allowing them to obtain health information on nearly any subject
within minutes.
Consumers' high and increasing demand for health information has been
demonstrated in a number of studies. One report indicates that
telephone inquiries to Public Health Service's health information
clearinghouses more than doubled in the early 1990s, while mail
inquiries grew by 43 percent.\4
Another recent survey indicated that more than two-thirds of
consumers have questions about their personal health, such as
questions on illness prevention or disease management.\5 Public
libraries reported in 1994 that 10 percent of all reference questions
are health-related, accounting for 52 million inquiries annually.
Similarly, voluntary health agencies, such as the American Cancer
Society, the American Heart Association, and the American Lung
Association, have reported reaching 82 million potential consumers
with health information, and answering over 4 million direct
inquiries each year.\6
Despite this interest, however, in a 1994 survey published by the
Medical Library Association, almost 70 percent of the respondents
reported problems in gaining access to appropriate health
information. When queried, 60 percent said that they would be
willing to pay for an easy way to access an integrated resource to
provide such health and wellness information.\7 In fact, several
informatics projects have been developed by consumers frustrated by
their inability to find needed information for their own health
conditions or those of friends or family.
The need for information is particularly apparent in self-care
situations, for example when dealing with one's own minor injury or
illness. According to the president of Healthwise, Inc. (a
nonprofit center for health care promotion and self-care research and
development), approximately 80 percent of all health care involves
problems treated at home.\8 Effective management of these problems
can prevent the illness or injury from progressing to the point of
needing professional intervention. The vice president for product
management at the Center for Corporate Health, Inc., estimated that
as many as 67 million clinical visits are unnecessary or highly
discretionary, and that many of these could be avoided if the proper
health education materials and decision support tools were provided
earlier.\9 For this to happen, however, consumers' self-treatment
must follow the correct self-diagnosis. If a consumer misdiagnoses
his or her health problem and then goes on to "treat" it, benefits
from automated dissemination of information could be negated and may
even result in higher medical costs.
Advances in technology make access to consumer health information
easier, responding to this increasing consumer demand. As reported
in 1995 by the Council on Competitiveness, 37 percent of U.S.
households had computers, and that number was expected to reach 40
percent by the beginning of 1996.\10
The use of technology in schools is also on the rise. Quality Data,
Inc. annually publishes "Technology in Public Schools," and reported
that the number of computers in the nation's classrooms reached 2.3
million in the 1991-92 school year. This figure has grown steadily,
reaching about 4.1 million for the 1994-95 school year. Just within
the last few years, according to the March 1996 Council on
Competitiveness report, the consumer market for CD-ROMs has
flourished. In 1993, 5 million were sold, for an estimated $202
million; in 1994 sales had more than quadrupled, to 22.8 million, for
an estimated $648 million.
In addition, the use of the Internet and commercial on-line services
(such as America Online, CompuServe, and Prodigy) has grown. The
Congressional Research Service reported that the Internet is the
fastest growing communications medium in history. Between 1993 and
1994, the Internet network doubled in size, as it has done yearly
since 1988. The Internet is estimated to reach between 15 million
and 30 million people, with 1 million new users each month.\11 Many
Internet users are retrieving health information, joining discussion
groups to share experiences on specific diseases, and accessing
bulletin boards that provide information on medical topics.
--------------------
\3 An acronym for compact disc read-only memory. The compact disc is
a nonmagnetic, polished metal disc with a protective plastic coating,
used to store information in digitized form. The disc is read by an
optical scanning mechanism that uses a high-intensity light source,
such as a laser. Use of CD-ROMs provides rapid and flexible
searching of large volumes of data.
\4 J. Michael McGinnis, Mary Jo Deering, and Kevin Patrick, "Public
Health Information and the New Media: A View from the Public Health
Service," Health and the New Media: Technologies Transforming
Personal and Public Health, ed. L. Harris (Lawrence Erlbaum
Associates, 1995), p. 132.
\5 Mary Jo Deering and John Harris, "Consumer Health Information
Demand and Delivery: Implications for Libraries," Bulletin of the
Medical Library Association, vol. 84, no. 2 (April 1996), pp.
209-216.
\6 McGinnis, Deering, Patrick, Health and the New Media, p. 133.
\7 Council on Competitiveness, Highway to Health: Transforming U.S.
Health Care in the Information Age, March 1996, p. 29.
\8 Donald W. Kemper, seminar on the Healthwise Communities Project,
Healthwise, Inc., Dec. 12, 1995.
\9 Allen Douma, "The Art and Science of Demand Management,"
Association for Worksite Health Promotion, vol. 2, no. 3 (summer
1995), p. 10.
\10 Council on Competitiveness, Highway to Health, p. 34.
\11 Congressional Research Service, 1994a, Welcome to Cyberia: An
Internet Guide, CRS Issue Brief, Washington, D.C.
WHAT IS CONSUMER HEALTH
INFORMATICS?
------------------------------------------------------------ Letter :5
Consumer health informatics is the union of health care content with
the speed and ease of technology. Informatics systems provide health
information to consumers in a wide range of settings.\12 For example,
while many people access health information through personal
computers in their homes, others access these systems in more public
locations such as libraries, clinics, hospitals, and physicians'
waiting rooms. Informatics systems have also been targeted to
specific groups of people, such as those with specific diseases, as
well as handicapped, rural, and high-risk populations. Other
systems, such as those that provide their information through the
Internet, have been designed to reach even wider audiences.
Consumer health informatics can be organized into three general
categories: systems that
-- provide health information to the user (one-way communication),
-- tailor specific information to the user's unique situation
(customized communication), and
-- allow the user to communicate and interact with health care
providers or other users (two-way communication).\13
The kinds of technologies that provide health information to users
include CD-ROMs containing health encyclopedias, on-line health
articles, bulletin boards, and telephone systems automatically
connected to databases that provide consumers with appointment
reminders. Software packages complement the computer hardware, with
products designed to help people learn how to perform specific simple
medical functions, such as using a thermometer or injecting insulin.
Systems that tailor information to the individual include automated
systems that obtain information from the consumer about his or her
general health or other health-related factors (such as family
disease histories and smoking habits) and, on the basis of this
information, suggest a need for preventive health procedures (such as
mammograms), or identify actions to curb high-risk behaviors.
Finally, some examples of the interactive category include
informatics systems that allow users to communicate with other
individuals, such as health care professionals or other users,
through such means as electronic mail, electronic bulletin boards,
and on-line discussion groups. Consumers not only obtain
professional advice, but also receive support from others who may be
experiencing similar health problems. For example, one individual
accessing an on-line group for prostate cancer patients noted, "I
gained the immense benefit of hearing the experiences and opinions of
several prostate cancer patients and survivors. I believe that
accessing this material saved my life."
--------------------
\12 Tim Kieschnick, Linda J. Adler, Holly B. Jimison, 1996 Health
Informatics Directory (Williams & Wilkins, 1996), p. 1.
\13 Kieschnick, Adler, Jimison, 1996 Health Informatics Directory, p.
2.
TYPES, SPONSORS, COSTS VARY
---------------------------------------------------------- Letter :5.1
We surveyed managers of 65 informatics projects currently in
operation and 13 under development, covering a wide range of
informatics types and technologies. Table 1 presents a sample of the
different types of informatics projects covered in our review,
including various target users and technologies employed.
Table 1
Sample of Informatics Projects by
Location, Description, Target Users, and
Technology Employed
Project/location Description Target users Technology
------------------ ------------------ ------------------ --------------------
Shared Decision- Health information Patients with Personal computers,
making system for disease illnesses computer software,
management and requiring laser discs,
decision support treatment videotapes, and
Various nationwide decisions, such as touch-screen
locations cancer and monitors
prostate disease
HealthQuiz Hospital/clinic- Patients scheduled Computer hardware
PreScreen based system for surgery and software
designed to requiring
collect medical anesthesia
Various nationwide history
locations information
directly from a
patient before
surgery
ComputerLink System linking Caregivers of Personal computers
health counselors Alzheimer's and
and Alzheimer's disease patients telecommunications
caregivers to
Cleveland provide
professional
advice and peer
support
Automated Systems designed Blood donor Computer hardware
screening systems to collect health candidates and and software
(HIV-related history and patients visiting
factors and health lifestyle doctors for
histories) information from various reasons
consumers on
sensitive issues,
Boston such as HIV-
related factors
and alcohol
consumption
House Calls System providing Poor, Standard touch-tone
health undereducated, telephones connected
information, chronically ill, to a central
Cleveland support groups, and/or drug- computer system
message services, addicted
and appointment individuals and
reminders patients
Internet and Systems providing All types of Personal computers,
commercial on- on-line access to consumers computer software,
line services medical and
information, telecommunications
Available health advice, and
worldwide disease management
support groups
--------------------------------------------------------------------------------
Source: Informatics projects documents and experts interviewed.
The 78 projects used at least 10 different technologies; most
projects, however, involved the use of personal computers, computer
software, or telecommunications. Many of the projects used these
technologies in combination. Figure 1 identifies these various
technologies, and the percentages of projects reviewed in which they
played a part.
Figure 1: Technologies Used by
GAO-reviewed Projects
(See figure in printed
edition.)
Source: 1995 GAO survey of informatics projects managers.
The informatics experts identified a wide variety of sponsors of
consumer informatics products and the infrastructure required to
support them: technology companies; network providers; health
maintenance organizations; organizations that fund health-related
research; the entertainment industry; federal, state, and local
governments; pharmaceutical companies; nonprofit and community
groups; insurers; and health care purchasing groups.\14 Other
sponsors include employers, entrepreneurs, universities, volunteer
health agencies, and venture capitalists.
Costs to develop and maintain consumer health informatics systems
also vary according to complexity and sophistication. Project
officials stated that systems-development costs ranged from very
little to $20 million.\15 These officials added that maintenance
costs also ranged from very little to $1.5 million annually.
However, because over half of the 78 projects we surveyed were either
in operation for 2 years or less or were under development, many
project officials did not have maintenance cost data available. One
low-cost system at the National Institute of Diabetes and Digestive
and Kidney Diseases was designed to provide health information over
the Internet. The system was developed using one of the Institute's
surplused personal computers for the project. Another expert from
the University of Montana reported that a low-cost Internet system
called Healthline was developed by university students as a class
project, with the university providing the equipment.
More expensive systems generally are more complex and permit
interaction with the user. For example, Access Health, Inc.,
contracts with insurers, managed care organizations, and employers to
provide advice on illness prevention, disease management, and general
health information to their enrollees and employees. The company
employs 470 people, including 265 nurses and 85 technical support
personnel, to conduct research and answer enrollees' and employees'
questions, and has spent $20 million on systems development over the
last 7 years.
--------------------
\14 Steven Locke, Tim Kieschnick, and Susan Pinco, draft position
paper of the Working Group on Mechanisms of Sponsorship for the
Institute of Electrical and Electronics Engineers Medical Technology
Policy Committee, Subcommittee on Personal Health Information
Systems, October 1995.
\15 Project officials did not always quantify all costs. For
example, one project official excluded labor costs because existing
staff were used. Similarly, other project officials did not quantify
equipment costs because they used existing resources or received the
equipment from another department within their organization, at no
cost.
USERS AND DEVELOPERS CITE
POTENTIAL FOR REDUCED COSTS AND
OTHER ADVANTAGES
------------------------------------------------------------ Letter :6
Since informatics is a new field, only limited research has been
performed to confirm its full monetary value. Some studies have
shown, however, that informatics offers the potential to reduce some
unnecessary medical services, thereby lowering health care costs.
Information technologies can also offer other advantages over
hard-copy text material. For example, the consumer can more readily
review material at his or her own pace and at the needed level of
detail.
POTENTIAL COST SAVINGS
---------------------------------------------------------- Letter :6.1
The Shared Decision-making system, an interactive video program, has
been developed to help facilitate patient participation in treatment
decisions. Health providers ask for personal data about the
patient's condition and enter the data into the computer system. The
system then analyzes these data and provides tailored information
about treatment options, including the potential benefits and risks
associated with each option, and the statistical probability of
treatment success. According to its developer, this system helps
educate the consumer, allowing patients and doctors to function
together as a team, creating an environment conducive to informed,
shared decision-making.
HHS' Agency for Health Care Policy and Research (AHCPR) and two
health maintenance organizations--the Center for Group Health
Studies, Group Health Cooperative of Puget Sound (Washington) and
Kaiser Permanente (Colorado)--jointly evaluated one program in this
system dealing with benign prostate hyperplasia--a noncancerous
enlargement of the prostate gland, usually affecting men over 50--and
found a 40-percent drop in surgery rates because fewer patients chose
the elective surgery. According to AHCPR officials, potential cost
savings could be substantial, as this is the second most common
surgical procedure performed in the Medicare population; it results
in an estimated annual cost to the federal government, according to
AHCPR, in excess of $2 billion.
The American Society of Anesthesiologists, Inc., evaluated a system
known as HealthQuiz, and found that Medicare billings were reduced
when clinics were required to use a computerized system that
collected and analyzed preoperative health-risk test and evaluation
information about patients. Centers using HealthQuiz ordered fewer
tests, and physicians relied more on the computerized information
before recommending additional tests. For example, before
implementing the system, standard diabetes tests were given prior to
each operation but, according to the anesthesiologists, were only
really needed for patients with diabetic symptoms or a history of the
disease. Anesthesiologists researched the benefits and said that
Medicare realized savings of $800,000 annually at one preoperative
clinic alone, from avoiding or eliminating unnecessary preoperative
testing.
At least half of all adults will at some point serve as caretaker to
an aging parent, spouse, sibling, or friend. One
system--ComputerLink--has been developed and used to help support
caretakers of Alzheimer's patients.\16 The Cleveland system provides
an electronic encyclopedia that describes over 200 facts about the
disease, stories about others' caregiving experiences, and local
services that are available. Another feature includes a method by
which the caretaker can communicate with other caretakers and with
professionals. The system helps the caretaker resolve issues, such
as choosing living arrangements and adopting safety procedures--for
example, taking car keys away from the ill person. This has helped
caretakers reduce feelings of isolation; according to one homebound
caretaker, it was her "lifeline to sanity." According to Case Western
Reserve University researchers, significant cost savings may occur
when caretakers are given access to systems such as ComputerLink and
other community-based services because they use fewer traditional
health and social services than those without such technical
supports--potentially saving taxpayers thousands of dollars.\17
According to these researchers, the cost of implementing
ComputerLink--$84,000\18 --was recovered in the first year of
implementation.
--------------------
\16 Patricia Flatley Brennan, Shirley Moore, and Kathleen Smyth, "The
Effects of a Special Computer Network on Caregivers of Persons With
Alzheimer's Disease," Nursing Research, vol. 44, no. 3 (1995), pp.
166-172.
\17 Fay Cobb Payton, Patricia Flatley Brennan, and J. B. Silvers,
Cost Justification of a Community Health Information Network: The
ComputerLink for AD [Alzheimer's Disease] Caregivers, poster, The
19th Annual Symposium on Computer Applications in Medical Care, New
Orleans (November 1995).
\18 This included a computer terminal and modem being placed in 47
caretakers' homes, with the necessary power supply, telephone, and
communication lines, as well as a nurse to answer caretaker questions
and provide health advice.
OTHER ADVANTAGES
---------------------------------------------------------- Letter :6.2
Advantages cited by project developers and system users include
-- anonymity--increased ability to remain unknown while accessing
personal or sensitive information, allowing a more accurate
representation of health data;
-- outreach--improved access by individuals in rural and
underserved areas;
-- convenience--the ability to use the system any time, day or
night;
-- scope--increased ability to reach large numbers of people; and
-- support--ease of establishing on-line relationships with others.
Officials at Harvard Medical School's Center for Clinical Computing
stated, for instance, that patients were more honest with the
computer because the system is "faceless and anonymous." For example,
a computer questionnaire identified more potential blood donors who
had HIV-related factors in their health histories than did personal
interviews by health-care providers. Another automated screening
tool for health histories identified a more accurate representation
of sensitive health data. Specifically, in the case of one patient,
doctors' notes indicated that "[he] uses alcohol socially"; in
contrast, the computer found that the patient had monthly blackouts.
Technological advances have also made it possible to reach out to
individuals in rural and underserved areas. One system provides
computer services to patients both in and out of the home through a
standard touch-tone telephone, without the need for a computer or
modem.
Dr. Farrokh Alemi, of the Institute for Telecommunications in Public
Health, Cleveland State University, has developed several
telecommunications systems for integrating patient self-care with
clinic care. Patients may leave messages for health professionals
via a voice recording; health professionals return voice mail
messages 24 hours a day. One entire program supports
cocaine-addicted pregnant women. Users who accessed the system at
least three times a week, it was found, participated in formal drug
treatment groups one and a half times more frequently than did
nonsystem users.
Another important advantage of informatics systems is scope; using
on-line networks allows information to reach large numbers of
consumers. For example, with a computer self-help group, a dozen to
20 people use the computer at the same time and receive instantaneous
input from all of the people. In addition, there are currently
hundreds of free bulletin board systems in the United States,
accessible day and night.\19 A number of bulletin boards focus on
addictions, disabilities, diseases, and other health issues.
According to one expert, "groups supported by technology help people
network, understand their disease, and communicate their needs [to
health care providers] more quickly."
In response to our on-line survey of Internet consumers, we found
that consumers value support groups for many different reasons. One
consumer said he gains support and understanding from his on-line
friends, who know exactly what his disease, chronic fatigue syndrome,
is like. A woman said she obtains information from the Internet that
she cannot get from her doctors or books about "the true facts from
real people living the nightmare of ovarian cancer." Several
consumers said that the Internet provides them with an easy way to
get information and that it is often more current and relevant than
other resources. In response to our question about the benefits of
the Internet, one consumer said that an informed patient can make
better decisions; . . . knowing the various options available for
patients with prostate cancer can only help the consumer. Finally, a
consumer noted that the Internet provides moral support, allowing
information and experiences to be shared among many people.
--------------------
\19 Edward J. Madara, "Using High Tech to Find and Form Self-Help
Groups for Better Health," American Self-Help Clearinghouse, prepared
for presentation at the Healthy Cities Communication Toolbox Summit
Conference, December 1993.
EXPERTS IDENTIFY ISSUES AND
OPTIONS
------------------------------------------------------------ Letter :7
While technology provides various advantages and may reduce
unnecessary medical costs, the health informatics experts in our
study acknowledged that computer systems also raise issues that need
to be addressed regarding the development and use of consumer
informatics. The experts also identified a number of technical and
management options to address each of these issues. In response to
our questionnaire, the 80 experts identified three issues as most
significant: access, cost, and information quality. Other issues
identified as important to ensuring effective development and use of
consumer informatics included security and privacy, computer
literacy, copyright, systems development, and information overload.
Figure 2 shows the percentages of experts who judged these issues
very significant or significant.
Figure 2: Experts' Views on
Relative Significance of
Consumer Informatics Issues
(See figure in printed
edition.)
Source: GAO analysis of 80 experts' views.
Our November 1995 conference panel participants discussed the various
options available for addressing these issues, including federal,
state, and local government and private-sector involvement in
informatics systems development. The pages that follow synthesize
the results of that discussion, along with the questionnaire
responses.
ACCESS, COST, INFORMATION
QUALITY: TOP ISSUES RELATED
TO CONSUMER INFORMATICS
---------------------------------------------------------- Letter :7.1
From 70 to almost 80 percent of the experts rated access, cost, and
information quality as significant or very significant issues
affecting the future of consumer health informatics. In terms of
access, health informatics is largely available only to those with
computers, modems, and telephones. At least 6 percent of U.S.
households lack telephones,\20 and about 60 percent lack computers.
Other issues influencing access were physical barriers, such as those
affecting residents of remote or rural areas, and physical handicaps,
hindering easy access to and use of computers.
Cost issues were also a consideration. The cost of purchasing
software, fees for networking and, for some, transportation costs to
a library or other public sources of information via computer may
also hinder accessibility. Besides the consumer perspective, issues
such as how much funding is needed, where funding comes from, and the
cost of keeping up-to-date with changes in technology, were important
to the experts.
Finally, information quality was raised by the experts as a very
significant issue. Ideas expressed dealt with the potential for
information to be incomplete, inaccurate, or outdated. One expert
told us that CD-ROMs with current dates are in reality based on much
earlier, out-of-date research. Experts also said that networks may
carry information that has been changed or taken out of context by
the on-line service or by consumers themselves. Others identified
the potential for biased information that may have been developed by
a person or organization with a vested interest. For example, a
developer of an informatics system disseminating information on high
blood pressure could skew the nature and tone of that information in
a way that steers consumers toward a certain kind of therapy, such as
a particular type of medication. This could create an artificially
high level of demand, which in the long run could cost consumers and
society more if patients are taking medications that are harmful or
not needed. Our July 1995 report on prescription drugs and the
elderly discusses the various factors that contribute to the
inappropriate use of prescription drugs and possible actions that
patients, physicians, and pharmacists may or may not take.\21
--------------------
\20 Falling Through the Net: A Survey of the "Have Nots" in Rural
and Urban America, U.S. Department of Commerce, National
Telecommunications and Information Administration, Washington, D.C.,
July 1995, pages 1, 3, 7, and 11.
\21 Prescription Drugs and the Elderly: Many Still Receive
Potentially Harmful Drugs Despite Recent Improvements
(GAO/HEHS-95-152, July 24, 1995).
OTHER ISSUES INVOLVING
INFORMATICS
---------------------------------------------------------- Letter :7.2
Other concerns, although seen as less critical, must also be
addressed, the experts felt. Security and privacy are essential,
particularly on networks, where consumers may want to discuss
sensitive health care issues, such as addiction and drug abuse.
Views on copyright and systems development issues were also
expressed. Experts noted two distinct sides of the copyright issue.
On the one hand, copyright laws protect the copyright holder and the
proprietary nature of the computer programs constituting the system
so others will not be able to unfairly reap the rewards that
rightfully belong to the developers. On the other hand, copyright
restrictions can impede the immediate availability of information to
the consumer.
Experts noted three issues regarding systems development: (1)
compatibility, (2) infrastructure, and (3) standardization. When
hardware or software incompatibilities exist, information transfer
among systems is hindered because it is difficult for the different
media to communicate and exchange information without programming
changes and/or additional hardware. Further, no infrastructure
exists--computers that link hospitals, clinics, and physicians'
offices--on a completely national and local level. For example, some
organizations and doctors have little or no technology in place, and
are therefore unable to share critical health-related and patient
information with or receive such information from other facilities,
public health service organizations, or consumers. Experts further
agreed that standards for health care data are lacking and that
data-sharing is affected by different data formats. As the Council
on Competitiveness reported, a patient's health history may be
organized in an automated format that differs from another format
used in electronic medical records maintained by hospitals or other
health organizations.\22 Experts said, however, that in the future,
it is important for consumers to be able to track and record their
personal health data across multiple health care providers'
information systems.
Finally, the issues of computer literacy and information overload
were mentioned by the experts. Most experts felt that systems are
becoming more user friendly, yet cited some people's fear of using
computers. The keyboard and mouse are still foreign to some
consumers, and may be intimidating. One expert said that many
consumers could be afraid to access on-line information services.
Further, one expert noted, being on the Internet "is like filling a
water glass with a fire hose." Information overload could result if a
consumer is overwhelmed with too much technical health information to
handle comfortably.
--------------------
\22 Similarly, we testified in 1994 about the lack of standards in
automated medical records. See Health Care: Benefits and Barriers
to Automated Medical Records (GAO/T-AIMD-94-117, May 6, 1994), p. 4.
EXPERTS AND USERS SUGGEST
OPTIONS TO ADDRESS
INFORMATICS ISSUES
---------------------------------------------------------- Letter :7.3
Experts discussed several options for addressing each informatics
issue, recognizing that the field is young and still evolving.
Options ranged from broad practices (such as establishing public- and
private-sector partnerships and using diverse and complementary teams
of experts to develop informatics systems) to very specific
suggestions (such as notifying consumers if the information is from
an unknown source) to help address the quality issue. The importance
of following sound systems-development guidelines in developing a
consumer health information system--such as developing a systems
plan, identifying user information needs, and developing technical
specifications--was underscored by most of the experts.
Experts noted that establishing public- and private-sector
partnerships could address many of the significant issues, especially
access. To illustrate, the New Community Corporation (a private,
nonprofit organization), the Newark Public Schools, and the
University of Medicine and Dentistry of New Jersey, formed a
partnership to provide technology to people who lack access to
computers. In 1994 and 1995, the partnership was awarded grants of
$107,000 and $99,800, respectively, from the Department of Commerce's
National Telecommunications and Information Administration (NTIA),
and began working with the schools and the university to provide
students and parents with access to personal computers and various
on-line health care services. Public- and private-sector leaders
noted that the project was an effective approach to ensuring access
and one that could be replicated in other communities. Other options
noted by the experts to address access included encouraging the
development of consumer informatics for underserved populations and
creating innovative ways to provide access. Ideas included
partnerships for creating incentives for private industry and
government to provide access to systems they develop for the United
States and other countries.
In addressing the cost issue, experts indicated that federal, state,
and local governments, as well as universities and venture
capitalists, could support research to further demonstrate the costs
and benefits of consumer informatics. As more research is performed
that demonstrates the effectiveness of such systems, interest in
developing and using them by many segments of society could increase.
One expert said, "the more that individuals are empowered directly in
wellness and preventive care issues, the less it will cost the
government to pay the health bills; it will be an investment for the
future."
The importance of having a diverse and complementary systems
development team of project experts from a variety of fields was also
stressed by the experts. For example, experts noted that to help
ensure information quality, it is important to include scientists,
technologists, community health professionals, and users. Peer
reviews of informatics systems developed could also help ensure
information quality. One expert noted that projects could be
evaluated and rated by various entities, including the American
Medical Association and the National Committee for Quality Assurance.
Several experts said that the government could monitor information
specific to its own area of expertise to help ensure that inaccurate
information was not disseminated. For example, the National Cancer
Institute could monitor informatics on cancer prevention and
treatment. Internet users also suggested that the government could
monitor and better organize federal health-related information
services, and coordinate and cross-link Internet web sites.\23 Other
experts suggested that a consortium of experts in a field could be
used, one involving government and private-sector representation, to
establish criteria for determining information quality. This group
could define guidelines for quality, including issues related to
timeliness of data and whether conflicting data exist.
Experts also noted specific options for addressing security/privacy
and systems development issues. Regarding security and privacy,
systems developers could provide information and education to the
consumer and the health provider on how the data would be stored and
used. The experts mentioned that sound systems development
practices, along with helping ensure that a project is well-designed,
can significantly help safeguard the data even if multiple users are
involved. Carefully assessing and identifying user needs will also
help develop a system that is user friendly and accommodates the
target users' needs. For example, when designing a system for senior
citizens, several developers increased the print size for better
visibility. Another developer made special hardware modifications to
respond to special needs of handicapped consumers.
--------------------
\23 A web site is a discrete location on the World Wide Web (a
loosely defined network of information sites that are linked to
different Internet storage devices all over the world) that contains
information on a specific topic.
GOVERNMENT INVOLVEMENT:
PRESENT ACTIVITIES,
FUTURE PLANS
------------------------------------------------------------ Letter :8
The federal government is performing activities to support and review
informatics. It develops and tests several projects, provides
sources of consumer health information (such as on-line services via
the Internet), funds various clearinghouses and information centers,
and provides grants to organizations that produce informatics
systems. Although some coordination among these activities exists,
HHS officials said improvements are needed, and HHS has taken some
action. According to HHS officials, the agency has completed a
report that describes key ongoing consumer health informatics
activities and identifies future steps needed to improve the
government's coordination of such activities. Further, a state
government expert we interviewed indicated that the state also plans
to provide its citizens with health information.
PRESENT FEDERAL ACTIVITIES
---------------------------------------------------------- Letter :8.1
HHS includes consumer information and education among its activities
to control disease and improve the health of Americans. Many of its
agencies have leadership responsibilities for consumer health
services and resource issues relating to access, quality, and cost of
care. For example, the Health Care Financing Administration (HCFA)
promotes timely delivery of health care information to its
beneficiaries. Other major HHS agencies also strive to prevent and
control disease by disseminating consumer health information; these
include the Centers for Disease Control and Prevention (CDC), the
Agency for Health Care Policy and Research, the National Institutes
of Health (NIH), and the Food and Drug Administration. Table 2 lists
a sample of federal agencies involved in consumer health informatics;
their activities are discussed on the following pages.
Table 2
Sample of Federal Government Agencies
Involved in Consumer Health Informatics
Department of Agriculture
----------------------------------------------------------------------
Food and Nutrition Service
Department of Commerce
National Telecommunications and Information Administration
Department of Defense
Department of Energy
Office of Environment, Safety and Health
Department of Health and Human Services
Agency for Health Care Policy and Research
Centers for Disease Control and Prevention
Food and Drug Administration
Health Care Financing Administration
National Institutes of Health
Office of Disease Prevention and Health Promotion
Department of Labor
Occupational Safety and Health Administration
----------------------------------------------------------------------
In recognizing the importance of providing health information to the
public, the Congress in 1976 established the Office of Disease
Prevention and Health Promotion (ODPHP) within HHS. The office is
responsible for coordinating activities related to disease
prevention, health information, promotion, and education, and
preventive health services within the Department. ODPHP established
the National Health Information Center, whose objectives are to
identify health information resources, channel requests for
information to these resources, and develop publications (both in
print and electronic form) on health-related topics of interest to
health professionals, health media (magazines, television, and radio
broadcasts), and the public. Other federal agencies also share
responsibility for providing health information to consumers; these
include the Departments of Defense, Energy, and Labor. In addition,
the Department of Agriculture administers a variety of programs; its
Dietary Guidelines for Americans\24 serves as the basis for nutrition
guidance to consumers.
Consumers can access federal health information through numerous
on-line sources. HHS provides such access to a number of its
agencies' consumer health information materials through HHS' Internet
home page.\25 Other agencies providing on-line consumer health
information include the Department of Energy's Office of Environment,
Safety and Health; and the Department of Labor's Occupational Safety
and Health Administration.
The federal government also operates many clearinghouses and
information centers with information on specific health topics.
These sources distribute health publications, provide referrals, and
answer inquiries; many can be accessed through toll-free telephone
numbers. Examples include the Centers for Disease Control and
Prevention's National AIDS Information Clearinghouse, the National
Health Information Center,\26 and the Department of Agriculture Food
and Nutrition Service's Food and Nutrition Information Center.
The government has also provided grants for selected projects. For
example, the New Jersey informatics project that provides health
information via an interactive computer system was funded by the
Department of Commerce's NTIA. HCFA, on December 1, 1995, provided a
1-year grant to the University of Wisconsin to use its Comprehensive
Health Enhancement Support System (CHESS)\27 program in support of
Medicare patients. All patients diagnosed with early-stage breast
cancer in the geographic area around Madison, Wisconsin, were invited
to participate. Physicians in the area are asked to recommend CHESS
to their patients. Computers with the CHESS software are placed in
the residences of the participants, and a feasibility study of CHESS'
effectiveness with the Medicare population will be performed to
assess the impact on the participants' health status and treatment
decisions, and on the basis of this, determine if the project should
be continued and/or expanded to reach more consumers.
Further, the administration has emphasized technology issues related
to the National Health Information Infrastructure (NHII).\28 The
National Institute of Standards and Technology awarded to the C.
Everett Koop Institute, in 1994, a grant totaling $30 million--$15
million in government funds and $15 million in matching private
funds--to develop NHII and to develop the information models and
tools required to use the information infrastructure. A public- and
private-sector information infrastructure task force was also formed,
to research and report on selected technology issues, one being
consumer health informatics. One of the task force's working groups,
along with HHS, has issued a draft paper on managed care and the
national information infrastructure, identifying consumer health
education and information systems as a critical component of the
health care system.\29
Another one of the task force's working groups, with support from HHS
and the Office of Management and Budget, has drafted the Consumer
Health Information White Paper, which discusses how the federal
government can undertake the transition from a predominantly
paper-based information service to one using emerging technologies.
HHS officials said to further promote public- and private-sector
partnerships and advance consumer health information, the agency has
begun to hold annual conferences; the first was held in 1995. HHS
officials also said the agency has convened its Science Panel on
Interactive Communication Technology and Health to help develop a
framework for evaluating consumer health information that could be
adopted by researchers and commercial developers seeking to improve
the effectiveness of their informatics systems. An HHS official said
that the panel plans to issue a preliminary report in April 1997.
--------------------
\24 Developed in coordination with HHS.
\25 A home page is a discrete location or address on the World Wide
Web (a network of information sites that are linked to different
Internet storage devices all over the world) that contains top-level
information and pointers to more detailed information about an entity
or organization.
\26 The National Health Information Center is a referral service.
When health professionals and consumers call in or write, referral
specialists search resource files and the Center's database to find
organizations that can best respond to their questions. The Center's
on-line database directory contains more than 1,100 health-related
organizations that provide health information.
\27 CHESS is an interactive computer-based system to support people
facing AIDS/HIV infection, breast cancer, and other health-related
crises. The program provides detailed health-related articles,
communication with medical experts, support groups, and personal
stories, which include individual accounts of people who have coped
with the same illness. The system also has programs to help
consumers make and implement medical treatment decisions--such as
whether surgery or radiation could be used to treat a specific form
of cancer.
\28 The National Health Information Infrastructure project is a
consortium of 14 companies and nonprofit institutions working to
create a foundation for developing information management tools that
will help remove geographic and economic barriers to health care
access.
\29 Catherine M. Crawford, U.S. Department of Health and Human
Services and Health Information and Applications Working Group,
Committee on Applications and Technology Information Infrastructure
Task Force, "Managed Care and the NII: A Public/Private
Perspective," Health Care White Paper (Final Draft, May 1996).
CURRENT STATE AND LOCAL
INVOLVEMENT
---------------------------------------------------------- Letter :8.2
States and local communities are also supporting projects that use
technology to disseminate health information to their residents. One
large-scale undertaking is the John A. Hartford Foundation-sponsored
Community Health Management Information System (CHMIS).
Collaborating with several states and local health care
organizations, CHMIS provides a community network of health care
information, including information on health research and physician
data on medical-effectiveness studies. Through December 1995, a
total of $16.7 million has been awarded to Iowa, Minnesota, New York,
Ohio, Vermont, Washington, and a Memphis, Tennessee-based group for
CHMIS project planning. A possible added benefit of such projects is
that they provide an initial framework for the infrastructure that
could be used to disseminate consumer information.
On a more local level, in Colorado, Fort Collins' FortNet is a
network providing health and other types of information. According
to the project director, Fort Collins has contributed upwards of
$60,000 over the past 2 years; private and federal contributions are
also part of the overall funding mix. A similar project exists in
Taos, New Mexico, where the local community enjoys free access to
various on-line resources, including directories of local health
providers. Financial support comes from the town of Taos, the state
of New Mexico, the University of New Mexico, and several private
corporations, along with NTIA funding.
FUTURE FEDERAL, STATE, AND
LOCAL PLANS
---------------------------------------------------------- Letter :8.3
To accelerate progress toward an efficient, useful, accessible health
information infrastructure, the Vice President in March 1995
requested that HHS lead an interagency group charged with addressing
and developing recommendations for federal activities that will
enhance the availability of health information to consumers. HHS has
recently developed a report that contains information on customer
access, the creation of more public- and private-sector partnerships,
and efforts to ensure access for various disadvantaged groups. HHS'
report also contains information on informatics issues related to
federal coordination and research and development. The report was
sent to the Vice President on July 18, 1996.
HHS and consumer health experts have recognized that federal
coordination of the government's activities in consumer health
informatics could be better; other federal activities to improve
consumer health informatics coordination are planned. While many
federal agencies are involved in providing health information to the
public, and many agencies provide health care funding through grants
for research, clinical studies, new technology demonstrations, and
disease prevention, no single, comprehensive inventory of all this
federal activity exists. Several federal entities fund similar
vehicles for disseminating consumer health information, and a number
of officials noted that HHS offices could benefit from additional
information-sharing about their systems-development work to ensure
coordination. For example, while NIH officials were developing
health information for the Internet web site, they discovered
inadvertently that another NIH office was also converting similar
information from written publication to electronic format for an
Internet web site. NIH has established a committee to evaluate
information to be placed on the Internet web site, and in April 1996
approved a proposal to consolidate information for its various
institutes.
CDC also plans to develop an electronic central repository where all
of its consumer information can be collected, viewed, and updated.
For example, consumer information--covering immunizations, flu, food
poisoning, and other illnesses--currently disseminated through
kiosks,\30 on-line, CD-ROM, fax, and the Internet, will be
centralized and more easily accessible. Further, HHS is developing a
project called the World Wide Web Gateway to Federal Consumer Health
Information. According to HHS officials, the project will bring
together in a single database hundreds of brochures and other
publications on many health topics, facilitating consumer access. In
addition, HCFA is in the preliminary planning stages of a major
project called HCFA On-Line. While specific milestone dates for
development have not been set, the initial phase is expected to
provide information about Medicare provider status; later phases,
however, will provide additional health information useful to the
Medicare consumer. As part of its development of the system, HCFA is
planning to conduct market research to determine consumer health
information needs.
In addition to the survey responses from health industry and federal
and state government experts, an official from the state of
Washington provided insight on that state's involvement in
disseminating consumer health information. According to this
official, state governments need to establish a strategy for
providing health care services and information to consumers.
Washington accomplished this by enacting the Health Services Act of
1993, and formally establishing a goal: developing a health care
system that improves the health of all residents at a reasonable
cost--including one that encourages healthy behaviors and the prudent
use of services by consumers. To achieve this goal, Washington plans
to develop an automated system with clinical information, information
on health care providers, employer health plan enrollment data,
health plan payment information, and medical diagnostic and procedure
information for consumers. All residents or consumers will be given
access to this automated system, managed by community-based
organizations and other on-line health services. Washington also
plans to evaluate the quality of its health-related information,
identify the costs of information services for funding purposes, and
safeguard patient and other health-related information by ensuring
that only authorized individuals have access. The state may take
several years to fully implement these plans to reach all of its
citizens but is committed to that goal.
Local involvement in consumer health informatics is expected to
continue as well. For example, the local communities involved in the
CHMIS projects plan to provide expanded services over the established
networks--
additional content areas to serve the health-information needs of
their consumers.
--------------------
\30 A stand-alone unit usually consisting of a computer that can
receive and process commands, a television screen monitor utilizing
touch-screen technology, and possibly a printer to provide output
information to the user. Some units also provide video and audio
presentations. Kiosks are usually placed in open settings, allowing
public access.
OBSERVATIONS
------------------------------------------------------------ Letter :9
Consumer health informatics is a young and emerging field. Multiple
players are involved in a variety of different ways, including:
for-profit and nonprofit companies; health maintenance organizations;
volunteer health agencies; federal, state, and local governments; and
community-based organizations, as well as consumers themselves.
Formal evaluations have been limited, yet the potential of this tool
for increased information access and consumer involvement in
individual health care appears promising. Many such systems are
enthusiastically supported by their users, but comprehensive studies
assessing the use of health informatics by large numbers of
consumers, along with other factors that influence illness
prevention, disease management, and their associated costs, have not
been completed. As the use of informatics systems increases, the
benefits and risks--tangible and intangible--may become more
apparent. At that time, whatever trade-offs are involved in the
widespread use of consumer health informatics could become easier to
measure.
AGENCY COMMENTS AND OUR
EVALUATION
----------------------------------------------------------- Letter :10
In commenting on a draft of this report, the Department of Health and
Human Services generally agreed with its thrust, offering additional
information and clarification, as well as editorial suggestions.
These comments have been incorporated into the report as appropriate.
HHS commented on the three areas discussed below.
HHS officials also said that a counterbalancing issue to informatics
quality is the potential for "censorship." While the experts on our
panel and several that we interviewed were concerned that inaccurate
information could be disseminated to consumers, a means of avoiding
this without possibly creating a "censoring" role at the same time is
not, HHS officials believe, a simple matter. HHS added that a small
group of experts, meeting at the 1996 HHS-sponsored Partnerships for
Networked Consumer Health Information conference, have begun to frame
recommendations in this area.
Finally, HHS officials cautioned that it is misleading to say that no
inventory of consumer health informatics activities exists, since the
National Health Information Center maintains a comprehensive database
of consumer health information activities in the public and private
sectors. Our analyses showed that this database does act as a health
information referral service and lists organizations and government
offices that provide health information upon request; it is not in
our view, however, a comprehensive inventory of federal consumer
health informatics systems or activities. HHS officials further
noted that an effort to develop an inventory may be inappropriate
because it would be outdated by the time it was published, given the
fast pace of development in this area. While we acknowledge that
keeping an inventory completely up to date would be difficult, we
continue to believe that maintaining an up-to-date inventory of
federally sponsored informatics systems offers great value to
consumers and the federal government. Consumers would be provided
with one current source for all federal activity in this area and
federal decisionmakers could get a better sense of what type of
federal investment is being made in consumer health informatics
initiatives; this information would likely be helpful in examining
options for public- and private-sector partnerships, and in
encouraging agency coordination and accountability.
--------------------------------------------------------- Letter :10.1
We are sending copies of this report to the Secretary of Health and
Human Services, the Director of the Office of Management and Budget,
and interested congressional committees. Copies will also be made
available to others upon request.
Please call me at (202) 512-5539 if you or your staff have any
questions concerning this report. Major contributors are listed in
appendix III.
Sincerely yours,
Patricia T. Taylor
Director, Information Resources Management/
Health, Education, and Human Services
CONSUMER HEALTH INFORMATICS
EXPERTS INTERVIEWED
=========================================================== Appendix I
Linda Adler
Kaiser Permanente
Oakland, CA
Farrokh Alemi, Ph.D
Cleveland State University
Cleveland, OH
Lee Baer, Ph.D
Massachusetts General Hospital
Boston, MA
Paul Barrett, M.D.
Kaiser Permanente--Colorado
Denver, CO
Ivor Benjamin, M.D.
University of Pennsylvania
Philadelphia, PA
Col. Gordon C. Black
Health Technology Systems
Gulfport, MS
Patricia Flatley Brennan, Ph.D
Case Western Reserve University
Cleveland, OH
E. Loren Buhle, Jr., Ph.D
Philadelphia, PA
Fran Carl
Healthdesk Corporation
Berkeley, CA
Sandy Cheiten
ABC Interactive News
New York, NY
Mike Cullerton
FortNet
Fort Collins, CO
David Cundiff, M.D.
Health Maintenance Associates
Louisville, KY
Rick Curtis
University of Montana
Missoula, MT
Jose Montez De Oca
LatinoNet
San Francisco, CA
Chris Dede, Ph.D
George Mason University
Fairfax, VA
Mary Jo Deering, Ph.D
Office of Disease Prevention
and Health Promotion
U.S. Department of Health and Human Services
Mike Dorio
People's Medical Society
Allentown, PA
Allen J. Douma, M.D.
Health ResponseAbility Systems, Inc.
Herndon, VA
Steve Downs
National Telecommunications
and Information Administration
U.S. Department of Commerce
Gene Drabinski
Healthwise, Inc.
Boise, ID
Connie M. Dresser
National Cancer Institute
National Institutes of Health
Gail Dutcher
National Library of Medicine
National Institutes of Health
Lewis D. Eigin
Social Health Services, Ltd.
Rockville, MD
Tom Ferguson, M.D.
Harvard University
Boston, MA
James Fries, Ph.D
Stanford University
Palo Alto, CA
Philip T. Garfinkel
Med Help International
Melbourne, FL
Linda Goldner
National Consumers League
Washington, DC
David Gustafson, Ph.D
University of Wisconsin
Madison, WI
Maureen Hanrahan
Kaiser Permanente--Colorado
Denver, CO
Robert G. Harmon, M.D.
Center For Corporate Health
Oakton, VA
Aileen Harper
Center for Health Care Rights
Los Angeles, CA
Linda Harris, Ph.D
MITRE Corporation
McLean, VA
Eric Horvitz, M.D., Ph.D
University of Washington
Redmond, WA
Holly Jimison, Ph.D
Oregon Health Sciences University
Portland, OR
Mary Gardner Jones
Consumer Interest Research Institute
Washington, DC
Michael Kassis
California Health Information for Policy
Sacramento, CA
Kathy Kranzfelder
National Institute of Diabetes
and Digestive and Kidney Diseases
National Institutes of Health
Alan J. Lazar
Agency for Health Care Policy
and Research
U.S. Department of Health
and Human Services
Andrew B. Lefton
National Health Information Center
Rockville, MD
Deborah Levine
Columbia University
New York, NY
Stephen Locke, M.D.
Harvard Community Health Plan
Boston, MA
Wendy Lynch, Ph.D
Health Decisions International
Boulder, CO
Edward Madara
American and New Jersey Self-Help
Clearinghouses
Denville, NJ
Nick Martin
National Cancer Institute
National Institutes of Health
Michael D. McDonald, Ph.D
The C. Everett Koop Institute
Rockville, MD
Eva Metcalf
American Telecare, Inc.
Irvine, CA
Richard Miller
Access Health, Inc.
Rancho Cordova, CA
Joy Mizell
American Medical Association
Chicago, IL
Bonnie Morcomb
United Healthcare Corporation
Minneapolis, MN
Pamela Morgan
Newark Networking Program
Newark, NJ
Dale Ogar
University of California
Berkley, CA
Gregory Parham
Information Technology Division
U.S. Department of Agriculture
Kevin Patrick, M.D.
San Diego State University
San Diego, CA
Jonathan Peck
Institute for Alternative Futures
Alexandria, VA
Vanessa Perez
American Heart Association
Dallas, TX
Don Powell
American Institute for Preventive Medicine
Farmington Hills, MI
Thomas Robinson, M.D.
Stanford University
Palo Alto, CA
Richard Rockefeller, M.D.
Health Commons Institute
Portland, ME
Dennis Rodriguez
Office of Communications
National Institutes of Health
Gerald H. Roesener
Tele-Health Systems
Indianapolis, IN
Robert M. Saigh
American Dental Association
Chicago, IL
Steven Schlossstein
Interactive Health Network, Inc.
Princeton, NJ
Stephen J. Schueler, M.D.
Pixel Perfect Corporation
Indian Harbor Beach, FL
Gary Schwitzer
Foundation for Informed Medical
Decision Making, Inc.
Hanover, NH
Kirk Shelley, M.D.
Milton S. Hershey Medical Center
Hershey, PA
Bill Silberg
American Medical Association
Chicago, IL
John S. Silva, M.D.
Advanced Research Projects Agency
Arlington, VA
Warner Slack, M.D.
Harvard University School of Medicine
Boston, MA
Juliette C. Sletten
Multimedia Health Solutions
Calverton, MD
Karen Storek
New Parents Network
Tucson, AZ
Victor Strecher, Ph.D
University of Michigan
Ann Arbor, MI
Steve VanNurden
Mayo Clinic
Rochester, MN
Jonathan Wald, M.D.
Beth Israel Hospital
Boston, MA
Carol Wallace
Prodigy Services Company
White Plains, NY
Elizabeth Ward
Washington State Department of Health
Olympia, WA
Omar Wassow
New York Online
Brooklyn, NY
John E. Wennberg, M.D., Ph.D
Dartmouth College School of Medicine
Hanover, NH
Richard Winett, Ph.D
Virginia Polytechnic Institute
and State University
Blacksburg, VA
Joy Yacolucci
National Organization for Rare Diseases
New Fairfield, CT
Barry Zallen, M.D.
Harvard Community Health Plan
Burlington, MA
PANEL CONFERENCE PARTICIPANTS AT
CONSUMER HEALTH INFORMATICS:
ISSUES AND CHALLENGES, NOVEMBER 9,
1995
========================================================== Appendix II
Patricia Flatley Brennan, Ph.D
Case Western Reserve University
Cleveland, OH
Mary Jo Deering, Ph.D
Office of Disease Prevention
and Health Promotion
U.S. Department of Health and
Human Services
Allen J. Douma, M.D.
Health ResponseAbility Systems
Herndon, VA
Philip T. Garfinkel
Med Help International
Melbourne, FL
Linda Harris, Ph.D
MITRE Corp.
McLean, VA
Allan J. Lazar
Agency for Health Care Policy
and Research
U.S. Department of Health and
Human Services
Wendy Lynch, Ph.D
Health Decisions International
Boulder, CO
Michael McDonald, Ph.D
The C. Everett Koop Institute
Rockville, MD
Kevin Patrick, M.D.
San Diego State University
San Diego, CA
Stephen J. Schueler, M.D.
Pixel Perfect Software
Indian Harbor Beach, FL
Karen Storek
New Parents Network
Tucson, AZ
Victor Strecher, Ph.D
University of Michigan
Ann Arbor, MI
MAJOR CONTRIBUTORS TO THIS REPORT
========================================================= Appendix III
ACCOUNTING AND INFORMATION
MANAGEMENT DIVISION, WASHINGTON,
D.C.
Christie M. Motley, Assistant Director
Norman F. Heyl, Assignment Manager
Rosa L. Ricks, Evaluator-in-Charge
Michael P. Fruitman, Communications Analyst
James F. Loschiavo, Social Science Analyst
ATLANTA REGIONAL OFFICE
Carl L. Higginbotham, Senior Evaluator
Tonia D. Brown, Senior Evaluator
DENVER REGIONAL OFFICE
Yvonne J. Vigil, Senior Evaluator
Joseph P. Sikich, Staff Evaluator
*** End of document. ***