Consumer Health Informatics: Emerging Issues (Testimony, 07/26/96,
GAO/T-AIMD-96-134).

GAO discussed the emergence of consumer health informatics. GAO noted
that: (1) the demand for health-related information has increased
steadily in the past 5 to 10 years; (2) many consumers have reported
problems in gaining access to appropriate health information, especially
in self-care situations; (3) several hundred informatics systems have
been developed in the past decade, but most systems are still in early
stages of development; (4) consumers are able to obtain health-related
information through one-way communications, tailor specific information
to unique situations, or communicate with health care providers through
two-way communications systems; (5) more complex systems that permit
user interaction are usually the most expensive; (6) consumers are able
to reduce unnecessary medical services and lower health care costs by
accessing health informatics systems; (7) these systems also help health
care providers to more effectively treat certain patients; (8) the most
significant issues that need to be addressed include system access,
system development cost, and information quality; (9) there is no
nationwide infrastructure to link information from hospitals, clinics,
and physicians' offices; (10) states and local communities are
supporting projects to disseminate health information to their
residents; and (11) many federal agencies are planning greater
coordination and evaluation of consumer health informatics.

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  T-AIMD-96-134
     TITLE:  Consumer Health Informatics: Emerging Issues
      DATE:  07/26/96
   SUBJECT:  Health care cost control
             Health care services
             Information dissemination operations
             Computer networks
             Consumer education
             Medical information systems
             Telecommunications operations
             Disease detection or diagnosis
             Data integrity
IDENTIFIER:  Shared Decision Making System
             ComputerLink System (Cleveland, OH)
             University of Wisconsin Comprehensive Health Enhancement 
             Support System
             John A. Hartford Foundation Community Health Management 
             Information System
             FortNet System (Fort Collins, CO)
             National Health Information Infrastructure Project
             HHS World Wide Web Gateway to Federal Consumer Health 
             Information Project
             
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Cover
================================================================ COVER


Before the Subcommittee on Human Resources and
Intergovernmental Relations
Committee on Government Reform and Oversight
House of Representatives

For Release
on Delivery
Expected at
10:00 a.m.  EDT
Friday,
July 26, 1996

CONSUMER HEALTH INFORMATICS -
EMERGING ISSUES

Statement of Patricia T.  Taylor
Director, Information Resources Management/
Health, Education, and Human Services
Accounting and Information Management Division

GAO/T-AIMD-96-134

GAO/AIMD-96-134T


(511209)


Abbreviations
=============================================================== ABBREV

  CHESS - Comprehensive Health Enhancement Support System
  CHMIS - Community Health Management Information System
  HCFA - Health Care Financing Administration
  HHS - Department of Health and Human Services

============================================================ Chapter 0

Mr.  Chairman and Members of the Subcommittee: 

We are pleased to be here this morning to help the Subcommittee
explore how technology is being used to make health care information
more available to individuals.  Our discussion today is based on our
recent survey of what is called consumer health informatics--the use
of modern computers and telecommunications to help consumers obtain
needed health information.  In conducting extensive interviews with
80 experts in the field, we identified 78 informatics projects and
obtained a wealth of information on

  -- the demand for health information and the increasing
     capabilities of technology,

  -- the emergence of consumer health informatics,

  -- reported potential cost savings and other benefits,

  -- experts' views on issues that need to be addressed in this area,
     and

  -- present government involvement and future plans. 

Information was also obtained at a conference we sponsored here in
Washington last winter, at which 12 of the experts in consumer health
informatics discussed their views in more detail.  In addition, we
received responses to our on-line survey from about 100 Internet
users.  Several of the experts we interviewed will also testify this
morning.  Our report on this subject is being released today.\1


--------------------
\1 Consumer Health Informatics:  Emerging Issues (GAO/AIMD-96-86,
July 26, 1996). 


   GROWING DEMAND, TECHNOLOGICAL
   CAPABILITY
---------------------------------------------------------- Chapter 0:1

Today's consumers are demanding more--and more detailed--health
information, and are becoming more active in making medical and
lifestyle decisions that affect them.  The demand for health
information has climbed steadily in the past 5 to 10 years.  In the
early 1990s, for example, mail inquiries to the Public Health
Service's information clearinghouses rose by over 40 percent, and
telephone inquiries more than doubled.  Public libraries reported in
1994 that 10 percent of all reference questions were health-related,
accounting for about 52 million inquiries annually.  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.\2

The need for information is particularly apparent in self-care
situations, for example when dealing with one's own minor injury or
illness.  About 80 percent of all health care involves problems
treated at home, according to the president of Healthwise, Inc., a
nonprofit center for health care promotion and self-care research and
development.  Effective management of these problems can prevent the
illness or injury from progressing to the point of needing
professional intervention.  However, consumers' self-treatment must
follow the correct self-diagnosis or benefits from automated
dissemination of information could be negated and overall health
could be harmed. 

The increasing demand for health information has driven the
development of consumer health informatics systems.  In fact, a
number of informatics systems were developed by individuals who were
frustrated by their inability to find needed information about their
own health conditions or those of family members or friends.  Several
hundred informatics systems--using a range of technologies, from
telephones to interactive on-line systems--have been developed in the
past decade alone.  Over half of the projects we identified were in
operation for 2 years or less, or were still in the very early stages
of development. 

Advances in technology also make access to consumer health
information easier, responding to this increasing consumer demand. 
In 1995, as reported by the Council on Competitiveness, 37 percent of
U.S.  households had computers; that number was expected to reach 40
percent by the beginning of 1996.  The use of technology in schools
is also on the rise.  According to Quality Data, Inc., the number of
computers in the nation's classrooms has grown steadily just in the
past few years, reaching about 4.1 million for the 1994-1995 school
year.  (In contrast, about 2.3 million computers were in our nation's
classrooms in the 1991-1992 school year.) Growth has likewise been
rapid in the use of the Internet and commercial on-line computer
services.  The Congressional Research Service has called the Internet
"the fastest growing communications medium in history." The number of
Internet users has doubled in size yearly since 1988; between 1993
and 1994 that number rose from 15 million to 30 million people. 


--------------------
\2 Council on Competitiveness, Highway to Health:  Transforming U.S. 
Health Care in the Information Age, March 1996, p.  29. 


   CONSUMER HEALTH INFORMATICS: 
   WHAT IS IT? 
---------------------------------------------------------- Chapter 0:2

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.  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 supports consumers' ability to obtain health-related
information through three general types of systems--those that simply
provide information (one-way communication), those that tailor
specific information to a user's unique situation (customized
information), and those that allow users to communicate and interact
either with health care providers or other users (two-way
communication).  I'd like to offer some examples of each of these
three general types of systems that are being used in informatics
today. 

First, examples of providing information in one direction include
on-line health-related articles, and computer software containing
health encyclopedias or specific simple medical instructions, such as
how to inject insulin; telephone-based systems that can be
automatically connected to databases to call individuals with
appointment reminders also fall into this category.  Second,
tailoring specific lifestyle recommendations aimed at improving one's
health can be accomplished with automated systems that request
information from the consumer--via a questionnaire dealing with
current health habits (such as exercise or smoking) and individual
and family health history, for example.  Information obtained in this
way can then be analyzed, scored according to a set standard, and fed
back to the user in the form of recommendations for improved health
management.  Finally, interactive communication is available through
on-line discussion groups, which offer the chance for those seeking
information on certain health topics or concerns to communicate with
other users or a physician or other health care provider. 

Systems vary a great deal in terms of the technology employed, costs,
and sponsors.  The kinds of technologies used in the 78 projects we
surveyed included (1) telephones and voice systems, (2) computers,
software, and on-line services, and (3) interactive televisions and
videotape.  (Attachment 1 at the end of this statement provides a
sample showing the range of projects included in our review.)

The systems costs we were able to identify ranged from very little to
$20 million to develop, and maintenance costs at the high end were up
to $1.5 million annually (most cost information was proprietary). 
One factor affecting cost is whether existing equipment and personnel
resources can be utilized.  According to an expert from the
University of Montana, a low-cost, Internet-type system was developed
by students there as a class project, with the university providing
the equipment.  More complex systems that permit user interaction are
usually among the most expensive.  For example, Access Health, Inc.,
contracts with insurers, managed care programs, and employers to
provide advice on illness prevention, disease management, and general
health information to their enrollees and employees.  The company
employs close to 500 people, including nurses and technical support
personnel; it reports that it has spent about $20 million on systems
development over the last 7 years. 


   REPORTED POTENTIAL COST SAVINGS
   AND OTHER ADVANTAGES
---------------------------------------------------------- Chapter 0:3

Since informatics is a new field, only limited research has been
performed to confirm its full monetary benefits.  Some studies have
shown, however, that informatics offers the potential to reduce some
unnecessary medical services, thereby lowering health care costs. 
Information technologies also offer other advantages over hard-copy
text material; for example, a consumer can more readily review
material at his or her own pace and at the needed level of detail. 

The Shared Decision-making system, an interactive video program, was
developed to help patients participate in treatment decisions;
evaluators have also reported potential cost savings.  According to
its developer, the system helps educate the consumer, allowing
patients and doctors to function together as a team.  An evaluation
of one program in this system--dealing with noncancerous prostate
enlargement--found a 40-percent drop in elective surgery rates. 
According to the Agency for Health Care Policy and Research,
potential cost savings could be substantial, as this is the second
most common surgical procedure performed in the Medicare population. 

Cleveland's ComputerLink--developed to help support Alzheimer's
caregivers by reducing their feelings of isolation--can also help
save money, according to researchers at Case Western Reserve
University, where it was developed.  This is because when caregivers
are provided access to such systems and other community-based
services, according to the researchers, they tend to need fewer
traditional health services, potentially saving taxpayers thousands
of dollars. 

Other advantages cited by developers and system users include

  -- anonymity--increased ability to remain unknown while dealing
     with personal or sensitive information, allowing a more accurate
     health picture to emerge;

  -- outreach--improved access by those in rural or underserved
     areas;

  -- convenience--ability to use the system at any time, day or
     night;

  -- scope--increased ability to reach large numbers of people; and

  -- support--ease of establishing on-line relationships with others. 

In response to our on-line survey of Internet consumers, we found
that consumers value support groups for many different reasons.  One
Internet user said he gains support and understanding from his
on-line friends, who know exactly what his disease--Chronic Fatigue
Syndrome--is like.  Another Internet user said she obtains
information electronically that she cannot easily get from other
sources about what she called "the true facts from real people living
the nightmare of ovarian cancer." Similarly, a homebound caregiver of
an Alzheimer's patient described ComputerLink as her "lifeline to
sanity." Finally, an individual said he gained "immense benefit" from
hearing of the experiences of fellow prostate-cancer sufferers,
adding his belief that "accessing this material saved my life."

Informatics systems do not and cannot replace visits with physicians;
they can, however, make such encounters more productive, for both
doctor and patient.  Such systems can also prepare doctors to more
effectively treat certain patients.  For example, doctors were able
to diagnose alcoholism with the help of a pre-visit questionnaire
because patients tended to be more candid with the computer, which
many see as "nonjudgmental." Specifically, in the case of one
patient, doctors' notes indicated that the patient "uses alcohol
socially"; in contrast, the computer found that the patient had
monthly blackouts.  Likewise, 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. 

While it is not difficult to find consumers and groups who endorse
this technology, there are--in the opinions of the experts we
interviewed--several issues raised by the rapid growth of
informatics, issues that need to be resolved in the coming years. 


   EXPERTS IDENTIFY ISSUES AND
   OPTIONS
---------------------------------------------------------- Chapter 0:4

In survey interviews and at our conference last winter, the experts
identified specific issues that will need to be addressed concerning
the future development of consumer health informatics, and options
for addressing them.  The three issues identified as most significant
were access, cost, and information quality.  The other five issues
raised dealt with security and privacy, computer literacy, copyright,
systems development, and consumer information overload.  (Attachment
2 shows the experts' views on the significance of these issues.)

Some health informatics systems are available only to those with
available computers, modems, and telephones, which raises the issue
considered central to many experts:  access.  About 60 percent of
U.S.  households lack computers,\3 and at least 6 percent lack
telephones.\4 Other identified issues involving access include
physical barriers, such as those affecting residents of remote or
rural areas, and those affecting individuals dealing with physical
handicaps.  The next issue, cost, was seen as affecting the
consumer's use of informatics in terms of expenses associated with
purchasing software, fees for using on-line services, and, for some,
transportation costs to a library or other public source of
information.  The costs of developing informatics systems were also
important to the experts:  these issues included how much funding is
needed, where funding comes from, and the cost of keeping up-to-date
with changes in technology. 

Information quality was also seen as a very significant issue because
the information in informatics systems could be incomplete,
inaccurate, or outdated.  According to one expert, CD-ROMs\5 in use
with current dates could in reality be based on much earlier,
out-of-date research.  Also identified was the potential for biased
information that may have been developed by a person or organization
with a vested interest.  Another risk is that consumers could take
information out of context or misapply it to their own medical
situations.  If they were to act on such information without first
checking with a qualified medical professional, harmful health
consequences could result. 

Experts discussed several options for addressing these issues,
ranging from applying broad practices to following more specific
suggestions.  One solution, establishing public- and private-sector
partnerships addresses all three issues, especially access.  To
illustrate:  the Newark (N.J.) Public Schools joined with the
University of Medicine and Dentistry of New Jersey and a private,
nonprofit corporation to provide technology to people lacking access
to computers.  In addition to using their own resources, in 1994 and
1995, this group was awarded a total of over $200,000 in federal
grants.  Public- and private-sector leaders noted that the project
was an effective approach for ensuring access and one that could be
replicated in other communities. 

Experts also 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.  Specific suggestions were also provided to address the
quality issue.  Peer reviews of informatics systems could help ensure
quality, or a consortium of experts in a field could be used,
involving government and private-sector representation, to establish
quality guidelines.  The experts also suggested that ways could be
found to notify consumers if information is from an unknown source. 

Five other issues were seen as somewhat less critical but still
needing attention.  Security and privacy were seen as important,
particularly with on-line networks, where consumers may wish to share
personal information anonymously.  Further, experts felt that while
copyright laws protect the proprietary nature of systems so that
others will not be able to unfairly reap the rewards that rightfully
belong to developers, at the same time copyright restrictions can
slow the immediate availability of information to the consumer. 

In the area of systems development, the experts noted issues with
compatibility, infrastructure, and 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 or
additional hardware.  Further, no nationwide infrastructure exists to
link information from hospitals, clinics, and physicians' offices,
making it difficult to share critical health-related and patient
information.  And standardization refers to the computer file formats
in which patients' health data are stored; various providers use
different information systems, further hindering data-sharing. 

Finally, information overload and computer literacy were identified
as issues related to the consumer.  Mr.  Chairman, we are a nation
with a wealth of information--and on-line information contributes to
this situation.  Experts indicated that on-line information could
overwhelm the consumer and provide him or her with too much technical
information to comfortably handle.  Most experts also felt that
although systems are becoming more user-friendly, some people still
fear computers and other technologies. 

Experts also noted specific options for addressing these issues. 
Sound systems development practices, along with helping ensure that a
project is well-designed, can also significantly help safeguard the
data.  Carefully assessing and identifying user needs will also help
develop a system that is user-friendly and accommodates the target
users' needs, which can increase consumers' comfort levels with using
new technology. 


--------------------
\3 Council on Competitiveness, Highway to Health, p.  34. 

\4 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, table 1. 

\5 An acronym for compact disc read-only memory.  CD-ROMs provide
rapid, flexible searching of large volumes of data through an optical
scanning mechanism that uses a high-intensity light source, such as a
laser. 


   PRESENT GOVERNMENT INVOLVEMENT
   AND FUTURE PLANS
---------------------------------------------------------- Chapter 0:5

The federal government in general--and the Department of Health and
Human Services (HHS) in particular--are actively involved in consumer
health informatics.  This involvement takes the form of project
development and testing, providing sources of consumer health
information, funding clearinghouses and information centers, and
providing grants to organizations that produce informatics systems. 
(Attachment 3 lists a sample of government agencies involved in these
activities.)

HHS is charged with controlling disease and improving the health of
Americans, and includes consumer information and education among its
activities to accomplish this.  Many agencies within HHS also have
central roles related to consumer health information and services. 
These include the Health Care Financing Administration (HCFA), the
Centers for Disease Control and Prevention, the National Institutes
of Health, the Food and Drug Administration, and the Agency for
Health Care Policy and Research.  Outside of HHS, other agencies
having components that deal with health information include the
Departments of Agriculture, Commerce, Defense, Energy, and Labor. 

As an example of federal involvement, last December HCFA awarded a
1-year grant to the University of Wisconsin's Comprehensive Health
Enhancement Support System (CHESS), which supports Medicare patients
diagnosed with early-stage breast cancer.  Patients choosing to
participate are provided with computers in their homes containing the
CHESS software, which includes detailed health-related articles and
the ability to communicate with medical experts and support groups. 
The project will review the impact of this system on participants'
health and treatment decisions and will help determine the
appropriateness of this technology for the Medicare population. 

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 and may provide an initial infrastructure that could be
used to disseminate consumer information more widely.  As an example
of local involvement in informatics, Fort Collins, Colorado, has
developed its own system, called FortNet, providing health and other
kinds of information for city residents.  Fort Collins contributed
over $60,000, to which federal and private contributions were added. 
A similar project exists in Taos, New Mexico, where the local
community enjoys free access to on-line resources that include
directories of local health providers.  The system is funded by
federal, state, and local contributions, including those of the
University of New Mexico. 

As for the future, HHS has sent a report to the Vice President
containing recommendations for federal activities that will enhance
the availability of health care information to consumers through the
National Health Information Infrastructure, a project that is being
jointly undertaken by 14 private companies and nonprofit institutions
and the federal government.  The National Institute of Standards and
Technology has awarded the C.  Everett Koop Foundation a grant
totaling $30 million--half in government funds and half in matching
private funds--to develop the tools needed for such an information
network.  On the state level, Washington plans to develop an
automated system containing clinical information and other medical
data; it will be made available to all state residents.  Local
involvement in consumer health informatics is expected to continue as
well.  For example, the local communities involved in CHMIS projects
plan to provide expanded services over the established
networks--additional content areas to serve the health information
needs of their consumers. 

HHS and other consumer health experts have recognized that federal
coordination of government activities in consumer health informatics
needs to be improved; while no single, comprehensive inventory of all
federal activity exists for this new field, many federal agencies
have plans for greater coordination and evaluation of consumer health
informatics.  For example, HHS' National Institutes of Health plans
to consolidate on-line information for its various institutes. 
Through its Gateway project, HHS is developing a database that is
expected to contain hundreds of publications on health topics.  The
agency is also involved in developing guidelines for evaluating
informatics projects; such an evaluation could be of value in helping
the government determine how it is investing in technology in this
area. 

Mr.  Chairman, informatics is a young and emerging field, and systems
have grown rapidly in a very short time; they are clearly providing
benefits to many.  As the use of informatics systems increases, the
benefits and issues will become more apparent.  Measuring these
benefits and determining how we will deal with some of the issues
raised by the experts will be necessary to ensure that consumers
receive the best information possible. 


-------------------------------------------------------- Chapter 0:5.1

This concludes my prepared statement.  I would be happy to respond to
any questions you or other members of the Subcommittee may have at
this time. 


SAMPLE OF INFORMATICS PROJECTS BY
LOCATION, DESCRIPTION, TARGET
USERS, AND TECHNOLOGY EMPLOYED
=========================================================== Appendix I

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
                    provide
Cleveland           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,
                    such as HIV-
Boston              related factors
                    and alcohol
                    consumption

House Calls         System providing    Poor,               Standard touch-tone
                    health              undereducated,      telephones connected
                    information,        chronically ill,    to a central
                    support groups,     and/or drug-        computer system
                    message services,   addicted
Cleveland           and appointment     individuals and
                    reminders           patients

Internet and        System providing    All types of        Personal computers,
commercial on-      on-line access to   consumers           computer software,
line services       medical                                 and
                    information,                            telecommunications
                    health advice, and
Available           disease management
worldwide           support groups
--------------------------------------------------------------------------------
Source:  Informatics projects documents and experts interviewed. 


EXPERTS' VIEWS ON RELATIVE
SIGNIFICANCE OF CONSUMER
INFORMATICS ISSUES
========================================================== Appendix II



   (See figure in printed
   edition.)

Source:  GAO analysis of 80 experts' views. 


SAMPLE OF FEDERAL GOVERNMENT
AGENCIES INVOLVED IN CONSUMER
HEALTH INFORMATICS
========================================================= Appendix III

----------------------------------------------------------------------
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
----------------------------------------------------------------------

*** End of document. ***