Tom Ferguson, M.D., Senior Associate, Center for Clinical Computing, Harvard Medical School; President, Self-Care Productions.
The shift from Industrial Age Medicine to Information Age Health Care is promoting the growth of consumer health informatics. The range of networked consumer health information (CHI) resources available to anyone through a home computer includes files, databases, software, people-to-people bulletin boards and chat rooms, and the more than 10,000 health and medical sites accessible on the World Wide Web. Commercial systems include home health workstations, decision-support software, and interactive CD-ROMs. Clinically based systems available to patients or clients, usually through a health maintenance organization (HMO) or other health care provider, include many of the above services and also may offer diagnostic spreadsheets, programs for short-term pyschotherapy, provider-patient e-mail, hospital and HMO web sites, and programs that link the home with the HMO or clinic. The focus of this discussion will be community-based online resources.
Health professionals are at a disadvantage when they try to learn why consumers go online to answer their health questions. Lay Internet users definitely have assumed the lead in creating content and connections. One group of these users--the veteran online self-helper--is comfortable with the 'Net culture, has made use of the resources for a year or more, and logs on to his/her regular haunts several times a week. These online self-helpers communicate back and forth with other people and exchange experiences and opinions with others who share their special concerns.
When asked to rate various online resources, self-helpers valued most highly individual stories and responses to their own questions from knowledgeable persons (clinicians, or self-helpers, or both). They appreciate online communities or support groups that have demonstrated their special concerns for the focus topic and are engaged in two-way communication.
Way down on the list, after answers to questions asked by other self-helpers and results of their own searches for information, came patient education, pre-existing printed pamphlets, and articles put up on the web. The online self-helpers consider the typical kinds of patient handouts as "shovelware"--educational materials that range from unintentionally inept to downright patronizing.
The health-active, health-responsible online consumers want to be treated as individuals, not as traditional passive patients. They want their doctors to be colleagues with whom they can interact. Their counterparts are 'Net-savvy clinicians who are comfortable being facilitators and willing to listen and offer consulting support, negotiation and caring. Physicians' experience with online connections is prompting experiments with provider-patient e-mail as a means of extending the clinical relationship.
Based on these and many other findings, a new map for health care might include individual self-care, friends and family, self-help/community networks, health professionals as facilitators, health professionals as partners, and health professionals as authorities. This Information Age model is based on an approach that has each level of care tied to every other level. Individuals are encouraged to take responsibility for their own health problems. Friends and family and the community can provide immediate help, support, and advice, if the individuals cannot make it alone. The last three levels make use of professional care in increasingly didactic ways until we are left with health professionals acting in their traditional way as authorities. The principal cause of our contemporary health care crisis is our deeply ingrained tendency always to use the health professional as an authority, as the hammer to pound all the nails of health care.
We will have arrived at the true Information Age
in health care when we all consider that the primary practitioner
in our health care system is the informed, empowered online layperson
and that the main roles for all health professionals will be as
coaches, teachers, supporters, and cheerleaders for systemwide,
computer-supported, high-quality, low-cost self-managed care.
Peter I. Juhn, M.D., M.P.H., Director of Special Studies, Kaiser Foundation Health Plan, Inc.
Kaiser Permanente has been a pioneer in pre-paid health care delivery for over 50 years. The question is where do we go from here?
Innovations will launch us into a new era of defining and exceeding consumers' needs and expectations. The goal to empower our patients will depend largely on telecommunication technologies, which will give people improved access to the health care providers and information.
Key trends are creating the opportunity and the need to change. Health care and wellness are important to Americans, and, in fact, two-thirds see health care as very important. Television highlights weekly stories on health care, some good and some bad. Health care facilities are spending up to a billion dollars a year to provide the public a large dose of information on health care. The robust demand for information is caused by demographics, sustained cost pressure, consumer awareness, new models of disease management, and accessible technology. It will grow as baby boomers reach maturity and face more health issues.
To stem the cost of health care in the 1980's, members of Kaiser Permanente opted for demand management and wellness programs. These programs have increased the amount of information the consumers receive, and they are trying to influence behavior as well. Self-management programs and medical savings accounts also show fairly wide acceptance.
Programs in information exchange are interesting, but the most promising trend in this area involves the Internet. The number of its users has increased from three-quarters of million in 1993 to 20 million this year, and 100 million users worldwide are expected before the year 2000. A big user of the Internet will be Generation X, those born after 1964 who will soon be in their child-bearing and health-consuming years.
The availability of health-related information and the rising consumer awareness present unprecedented challenges. The first challenge is about content--there are now over 10,000 web sites, with more to come. Customers must make time-consuming searches to understand their options and make decisions. Providers must update information on health care continually.
The second challenge is with consumers: What are they using the information for? how do we provide them with more reliable and higher quality information? how do we involve them in the development process? and how can we make the information relevant and useful? Consumers are being drowned out by the providers. Another question is: How do we confront the gap between the have and have-nots?
Finally, we must move forward. Talk is good if it
leads to bold ideas; talk is best if it implements these ideas.
PLENARY PANEL: COMMERCIAL ONRAMPS TO CONSUMER HEALTH INFORMATION
Margaret Cary, M.D., M.P.H., M.B.A., Regional Director, U.S. Department of Health and Human Services (HHS), Moderator.
In the Federal Government, we must partner with private
organizations to ensure sound content and equitable access to
consumer health information.
Jeffrey D. Miller, IBM Health Village, Brand Executive, Health Networking Solutions, Worldwide Healthcare Solutions, IBM.
The Health Village delivers a host of health resources
to the consumer through private Internet services or public Internet
offerings in partnership. The goal is to develop a two-way network
of information exchange between health care consumers and providers.
However, economic, social, and technological obstacles often get
in the way. We address these obstacles by examining issues of
access, context, content, integration, and enablement. We must
keep the consumers in mind because they are the ones who will
use the tools we hope to deliver.
Timothy J. Bahr, America's HouseCall Network, President, Healthcare Division, Orbis Broadcast Group.
America's HouseCall Network is an open system aimed
at making organized information accessible to anyone with a telephone
or computer. For consumers, the network offers 24-hours-a-day/7-days-a-week
medical information. People with similar disorders will be able
communicate with one another and participate in physician-moderated
chat groups. For providers, there will be interactive, continuing
medical education with online courses and credits. There also
will be a focus on disease and demand management, practice management,
and consumer information and even a national hospital referral
network. The American Association of Physicians will be a key
partner in creating a credible source of information.
Ellen Taylor, Manager, America Online-Health Channel, Business Development, America Online.
Community, more than content, is what keeps people
coming back and is America Online's (AOL) approach to health information.
AOL takes content in a certain area and builds community and programming
around it, especially for people with chronic and rare diseases.
At AOL, information and communication are aggregated in channels,
which include health forums of content, message boards, chat rooms,
and communication with experts. Special programming is a big component,
as well as medical databases and full Internet access. We are
working to improve access to AOL for consumers and providers and
to address the challenges posed by the vast amount of information
Susan Bruce, Time Warner Cable's Full Service Network-Health Section, Director, Interactive Education and Health Programming, Time Warner Cable's Full Service Network.
Through interactive television, Time Warner's Full
Service Network brings information and services on health care
to consumers. Health TV offers information and also tools for
changing behaviors. The user completes a personal health questionnaire,
which is analyzed by the program and serves as a recorded history,
and gets information on health risks and recommended videos. Health
TV will include interactivity and group activities through a library
of health videos, bloodmobiles, 5k runs, weight-loss programs,
and many more activities. With The Koop Foundation, Health TV
will develop health care networks to be accessible through many
environments and to provide complete health profiles.
PLENARY RESPONSE PANEL
Tom Linden, M.D., coauthor, Dr. Tom Linden's Guide to Online Medicine, McGraw-Hill Publishing, Moderator.
Can we meet the health information needs of consumers
and can we answer the health questions that they are or should
be asking? Interactive media has to show that it can succeed where
TV and radio have failed.
Gary R. Gunderson, Director of Operations, Interfaith Health Program, The Carter Center.
The real leading causes of death are smoking, alcohol
consumption, firearms, and sexual behavior. The risk factors are
overwhelmingly behavioral and overwhelmingly preventable. But
these derive from a network of decisions over time. Many health
decisions are shaped by industries wanting to make money. Our
information strategies may be one more element that marginalizes
groups and takes information farther out of reach for some. Health
care providers do not and cannot fulfill all health information
needs in a community, especially those of marginalized people.
A local religious leader, who respects individuals regardless
of their status, can reach these people. If someone in a church
can access information and act as a trusted gateway to the information,
then individuals would trust the information and receive it as
part of the community that accepts them.
Carla J. Funk, Executive Director, Medical Library Association.
Libraries are bridges over and onto the information
highway because they make health information easy to access and
understand. Today, consumers take charge of their health, and
libraries provide and improve health information more than ever.
Libraries deal with information-rich and information-poor people,
and they are experts in information-seeking behaviors. Libraries
also customize information for consumers and, by teaching people
to teach themselves, help them become smart health care consumers.
Library associations work in an advocacy role for the individual's
rights to unrestricted access to information on human health and
Richard G. Rockefeller, M.D., Ed.M., President, Health Commons Institute.
Patients are getting a vast amount of knowledge from
the Internet and putting their physicians in embarrassing positions.
Patients and doctors have to come together inside the health black
box to make medical and other health decisions. Physicians need
correct and complete information when they see patients. Studies
show that when patients are more informed, they get better care.
Surpassing mere information, not just delivering it, is the true
issue. Resolving medical uncertainty at a higher level of knowledge
is incredibly useful, but it requires subtle work that draws on
the separate skills of patients and doctors. Techniques for forming
partnerships require that doctors, patients, and computers perform
essential, specific, and only partly overlapping roles. Health
care organizations must recognize that the partnerships will require
J. Keith Green, President and CEO, Patient Education Media, Inc., Time Life Medical.
Building a brand name, a contract between a company
and consumers, is hard work and brings with it opportunities and
responsibilities. Our company's brand has the core values of accessibility,
accuracy, ease of understanding, and medical authority. The baby
boomers are reaching their fifties and demanding more information.
The lines are blurred between what is unnecessary information
and what is medicine. Videos are part of mass medical communication.
They play on equipment that is available in many homes, is easy
to use, and keeps the user focused and interested.
Perry Jurgens, Vice President and General Manager, Creative Services, IVI Publishing.
The four P's of health care-patients--providers,
plans, and peers--are being joined by the publishing and packaging
of health information. When we are asked what we are trying to
accomplish, the answer must be the delivery of quality content.
We need to engage the 80 percent of the population that only seek
out information after a health problem has been diagnosed. On
the chain of delivery of health information, the first level is
access to correct information. Speed and consistency are issues
because they relate to how information gets to a person. Navigation
is important in letting people know where they are and how they
got there. Most important is the feeling of community that people
have from relationships with their doctors and with other patients.
LUNCHEON PRESENTATION: WHAT A DIFFERENCE A YEAR
MAKES . . . OR DOES IT?
Reed Tuckson, M.D., President, Drew University of Medicine and Science.
What a difference a year makes since our last meeting . . . or does it? The answer is yes and no, as seen in the following 10 points.
In conclusion, we must always think about the larger
purposes and transcendent values of this work. All of us need
to recommit ourselves to life and health.
WORKING PARTNERSHIPS (#1): CREATING A PARTNERSHIP
MODEL FOR HEALTH EDUCATION AND HEALTH CARE
Eleanor M. Vogt, R.Ph., Ph.D., National Pharmaceutical Council, Inc., and James R. Kuperberg, Ph.D., Kuperberg Consulting Group, Speakers.
Networked health information and services are key
to helping individuals to become active partners in their care
and to identify, create, and bring their resources to the problem.
Consumer health learning and patient empowerment form the critical
foundation for optimal health in the years ahead. However, payers,
providers, and consumers of care need better communication and
cooperation. The first step for any health care organization interested
in developing a partnership model is to describe a preferred health
care system that facilitates and enhances consumer health learning.
The organization should distinguish between aspirations and actual
circumstances and identify visions as well as barriers that work
against them. Developing action steps that build on favorable
trends and address key obstacles is the basis for an effective
DESIGNING EFFECTIVE APPLICATIONS (#1): LESSONS
FROM INSTRUCTIONAL DESIGN
Chris Dede, Ed.D., George Mason University, Speaker.
Instructional design is moving beyond passive, presentational,
assimilative strategies for teaching and learning. Effective educational
designs are learner-centered, based on authentic real-world problems,
and guided by expert facilitators. Emerging information technologies
empower these innovative instructional designs through such capabilities
as case-based reasoning webs, shared synthetic environments, and
virtual communities. Developers of consumer health information
services need to master the new media and incorporate them into
approaches for design and delivery. Researchers should study the
effectiveness of these learner-centered models in changing the
mental processes and the behaviors of the public. New models for
formative and summative evaluation of learner-centered health
applications need to be refined. Designers, researchers, and funders
concerned with health education should become familiar with ongoing
work on learner-centered design strategies and innovative delivery
HEALTH ONLINE AND THE EMPOWERED MEDICAL CONSUMER
Tom Ferguson, M.D., Senior Associate, Center for Clinical Computing, Harvard Medical School, Moderator; Stephen Marine, University of Cincinnati Medical Center, and Dave Robertson, M.B.A., HealthWorld Online, Speakers.
A new generation of online health resources for the
consumer will require major changes in the ways we think about
and practice health care. With the new tools and current systemwide
cost constraints, consumers must play an upgraded role in their
own care, and health professionals will increasingly serve as
facilitators and supporters of self-managed care. The empowered
medical consumer, with new, online resources, will be essential
in the Information Age. Consumers should create and maintain member-run,
self-help-oriented online resources that provide information and
support for others with shared concerns. Developers should design
systems for all stakeholders, and providers should encourage online
communication between clinicians and health professionals. Medical
licensure laws should be updated, and private medical information
should have its confidentiality protected. Pilot programs and
evaluations in the area of online health resources should be funded.
COMMUNITY ACCESS CHANNELS
Mary Gardiner Jones, L.L.D., Alliance for Public Technology, and Consumer Interest Research Institute, Moderator. Kenneth Chapman, The National Trust for the Development of African-American Men; Stephen H. Snow, Charlotte's Web Community Network; Lois G.F. Steele, Indian Health Service, HHS; and Jeffrey Finn, SPRY Foundation, Speakers.
Community access to health information uses the term
"health" in its most comprehensive sense as embracing
both personal health (defined in terms of wellness, prevention,
and the management of chronic conditions in the home and community
facilities) and community health (defined as the social, economic,
and environmental factors in a community that impact personal
health). Emphasis is directed toward developing health information
for individuals, consumers, patients, and caregivers in the home,
clinic, and community facility--wherever health-related decisions
are made. Increased knowledge of how individuals learn and are
motivated to learn has focused attention on delivering health
information throughout the broad range of media, the use of interactivity,
and the extension of the sources of information to social service
providers, community organizations, and peers. Communication channels
should be evaluated for personal and community health data in
the interactive visual, textual, and audio formats and cultural
languages that are most conducive to motivation and learning by
DOES IT WORK? (#1)
Patricia F. Brennan, R.N., Ph.D., Case Western Reserve University, Moderator. Marjorie Greene, ANSER, and Holly B. Jimison, Ph.D., Oregon Health Sciences University, Speakers.
To evaluate community networks, one needs to look at their impact on efficiency and health outcomes. Studies show that networks can reduce the average time to develop a patient treatment plan across multiple organizations and also the time to place a patient in an alternative continuing care facility. However, showing reduced time for health outcomes on a case-by-case basis is almost impossible. Doing so requires tracking a patient across facilities over time.
The field of consumer health information evaluation
still is very young. Evaluation should begin in the planning stages
and culminate after a project's deployment. Important measures
include access, availability, who uses the system (and how and
when), process variables related to behavior change, health outcomes,
and satisfaction. One project is a communitywide intervention
involving a consumer health book and related computer application,
publicity, workshops, and community organizing. The purpose of
the evaluation is to find out whether this effort could be generalized
to another community. It has been difficult to show a communitywide
effect with a sample of one intervention and two controls because
so much health information activity already was taking place in
COMMUNITY HEALTH INFORMATION NETWORKS
Pamela Hanlon, Community Medical Networking Society, and Richard D. Rubin, Foundation for Health Care Quality, Speakers.
Most community health information networks (CHIN's)
have focused on meeting the needs of the private sector and the
health industry. CHIN's also offer promise for meeting the health
information needs of the public. Integrating the interests of
the broader community with the business and clinical needs of
the health industry is an important objective for CHIN's. The
legislative and executive branches of government should recognize
that an improved health information infrastructure is a prerequisite
for successful reform of the health system. CHIN's and other forms
of public and private health information partnerships should be
encouraged and supported. For the health industry, investment
in health information technology is critical. For consumers, becoming
better informed for better health decisionmaking is important.
Consumers need to state their needs, push for accountability,
and protect their privacy.
DOES IT WORK? (#2): AN EVALUATION FRAMEWORK FOR
CONSUMER HEALTH INFORMATICS
Catherine M. Crawford, Ph.D., HHS, Moderator. Christopher Dede, Ed.D., George Mason University; David Gustafson, Ph.D., University of Wisconsin-Madison; Holly Jimison, Ph.D., Oregon Health Sciences University; Kevin Patrick, M.D., San Diego State University; Thomas Robinson, M.D., M.P.H.; and Victor Strecher, Ph.D., M.P.H., Speakers.
Speakers in this session are members of the Science
Panel on Interactive Communication and Health (SciPICH). Sponsored
by the Office of Disease Prevention and Health Promotion in the
U.S. Department of Health and Human Services, SciPICH is a national
panel charged with creating a framework for evaluating interactive
consumer health applications. Good evaluation has the potential
to speed up development and dissemination of effective new technologies,
while promoting creativity and innovation. The lack of good evaluation
leads to unwise investment in ineffective technologies (by developers,
providers, policymakers, and end-users) and discourages useful
innovation. One goal of SciPICH is to stimulate an environment
in which evaluation is encouraged and "purchasers" are
allowed to make informed decisions about specific health communication
products and classes of products.
CONSUMER HEALTH INFORMATION IN THE WORKPLACE (#1
Linda M. Harris, Ph.D., Concept Five Technologies, Moderator for both sessions. Speakers at #1: Peter O'Donnell, HealthDesk Corporation, and Bo E.H. Saxberg, M.D., Ph.D., Johnson & Johnson.
Speakers at #2: Catherine M. Baase, M.D., the Dow Chemical Company; Marsha G. McCabe, Texas Instruments, Inc.; and Donald M. Vickery, M.D., Health Decisions International.
The emerging role of employees as activists in managing
chronic diseases and their costs is complicated by the problem
of getting the disease management information to them when and
in the form they need. It still is a challenge to convince employees
of the value of self-management and disease management. Moving
from one-way information flow to interactive communication is
another challenge. Studies of some consumer information projects
are finding decreased cost of claims and reductions of emergency
room visits, which is convincing employers to expand the programs
to more employees and retirees. Telephone triage is receiving
some of the highest usage among demand management products. Security
issues have been associated with interactive communication with
employees. A possible solution is Intranets with secure home links.
HEALTH ONLINE AND THE EMPOWERED MEDICAL CONSUMER
Tom Ferguson, M.D., Senior Associate, Center for Clinical Computing, Harvard Medical School, Moderator. J.J. Singh, Caresoft, Inc., and Don W. Kemper, Healthwise, Inc., Speakers.
Projects such as Healthwise Communities in Idaho
are bringing a new level of health informatics to the home and
workplace. These projects are testing whether community-based
informatics can make a difference to an entire population by supporting
self-care and shared decisionmaking. They provide indepth medical
information needed by the patient to participate in treatment
option decisions. Empowering the medical consumer also means developing
systems that meet the needs of all stakeholders in a community:
consumers, family members, providers, etc. Some of these focus
on providing online services for consumers. There are many key
issues for projects such as these. For example, what online services
are most useful to the consumer? And what types of online services
provide the greatest cost savings while maintaining or increasing
quality of care?
HELPING CONSUMERS CHOOSE HEALTH PLANS
Sandra K. Robinson, M.S.P.H., HHS, Moderator. Lisa Adatto, Benova, Inc.; Diane Bennett, Benova, Inc.; and Christina Zarcadoolas, Ph.D., ABACUS Management Group, Inc., Speakers.
The purpose of the information on the Kiosk project
is to help people make informed choices on health plans. Quality
data are being integrated with traditional data, such as names
of health care providers, the cost of premiums, and the amount
of copayments/payments. The Kiosk system does not force people
to read, but it does make information available to health care
consumers around the clock. The Kiosk system has audio options
and provision for multiple languages, although these features
usually are too expensive. The developers must be careful with
cross-cultural communication and language barriers, not using
words that will frighten the Kiosk users. The Kiosk developers
must be educators as well as information providers in order to
teach people about the plans. The underlying computer program
will give information about where people spend the most time using
it, helping researchers understand the decision process. An exit
survey asks users to rate the Kiosk program.
WORKING PARTNERSHIPS (#2):
LINKING RESEARCH-BASED PROJECTS WITH HMO's, CLINICAL
CENTERS, AND MEDICARE
David H. Gustafson, Ph.D., University of Wisconsin, and Farrokh Alemi, Ph.D., Cleveland State University, Speakers.
The breast cancer program of CHESS puts computers
in homes of women with the disease for 3 to 6 months so they can
have access to questions asked by similar women, receive online
150 articles on breast cancer, and have computer access to discussion
groups. The results of research on this and other health problem
modules of CHESS indicate that use of the system is fairly high;
women use the system more than men; the less educated tend to
use the system more than the better educated; people involved
with the system stay in the hospital less time; and quality of
life improves with the use of CHESS. The All Kids Count projects,
working with 5,000 patients from 15 providers, link cocaine-addicted
women by computer telephone service to their physicians, sponsor
an outreach service to new mothers to encourage immunization,
perform primary screening of alcoholics, and link the use of telephone
service with care providers. The projects have found the importance
of going where communication technologies fit the health care
provided. The use of telephone service was associated with one
of the single highest occurrences of improved health.
TOOLS AND TOOLBOXES FOR HEALTH INFORMATION APPLICATIONS
Stephanie S. Lipow, Lexical Technology, Inc., and David J. Warner, Institute for Interventional Informatics, Speakers.
Sponsored by the National Library of Medicine, the
Unified Medical Language System (UMLS) addresses the problems
encountered when disparate sources, such as electronic textbooks,
computer-based patient records, and laboratory systems need to
be accessed. By mapping together concepts and terms from more
than 30 vocabularies and classifications, the UMLS Metathesaurus
can provide a path from the users' terminology to the terminology
used by a particular source. UMLS Knowledge Sources will facilitate
integration of diverse types of information. Anyone with a task
for which a controlled clinical vocabulary would be useful may
participate in NLM's Large-Scale Vocabulary test. This test will
determine the extent to which existing health-related terminology
covers the concepts needed to record patient and public data accurately
and precisely by a range of sites.
DESIGNING EFFECTIVE APPLICATIONS (#2): LESSONS
FROM HEALTH COMMUNICATION
Vicki S. Freimuth, Ph.D., HHS, Moderator. Scott Ratzan, M.D., Emerson College and Tufts University School of Medicine, and Linda Adler, Ph.D., Kaiser Permanente, Speakers.
The field of consumer health informatics should make
use of research and practice in health communication. However,
the field does not appear to be aware of the literature in health
communication. We need to develop a means of testing consumer
health informatics applications. There should be better collaboration
with the fields of health communication and health education.
Developers of systems need to be aware of the theory and research
in health communication, behavior change, and information dissemination.
Objective external sources should evaluate projects involving
consumer health informatics.
DESIGNING EFFECTIVE APPLICATIONS (#3): DESIGN
IMPLICATIONS OF DIFFERENT MEDIA
Deryk Van Brunt, Dr.P.H., University of California Berkeley, Speaker.
Certain requirements need to be met in order to design
effective consumer health information systems either for the Internet
or interactive television. First, one has to have a clear vision
of the goal of the application (for example, entertainment, health
education, etc.). Second, one needs to develop and adhere to a
set of development criteria appropriate to accomplish the goal.
For example, if the goal is to develop a useful and entertaining
application, some of the key criteria include providing timely,
personalized, and high-quality information. Third, if applications
are to result in behavior changes, they need to provide more than
just reference information. Users must gain a sense of health
susceptibility and receive assistance making health decisions
and operationalizing those decisions.
PUBLIC HEALTH AND CONSUMER HEALTH INFORMATICS
Ronald Bialek, M.P.P., Public Health Foundation, Moderator. Gwendolyn Doebbert, California Department of Health Services; William Halvorson, M.B.A., Pacific Bell; and Rosalind Thomas, New York State Department of Health, Speakers.
As public health systems become more complex, the
need to utilize information technologies more effectively becomes
apparent. Strategies are necessary for incorporating current and
emerging technologies into the public health information infrastructure
to improve information collection, analysis, and dissemination.
In the future, partnerships for using new technologies will be
formed in local communities. Managed care can learn from experts
in the public sector, who have years of experience in reaching
out to communities and designing programs that improve the public's
health, and can foster new technologies. The public sector will
want to update the skills of its practitioners. Academia will
have an important role in preparing new professionals to use the
emerging technologies and providing continuing education programs
to retrain the existing workforce.
THE CASE FOR CONSUMER HEALTH EDUCATION IN MANAGED
Gail H. Knopf, Humana, Inc., Moderator. David Cochran, M.D., Kaiser Permanente, and Edward Bergmark, Ph.D., United Health Corporation, Speakers.
Managed care evolves through three stages. In stage
one, people are focused on the price of the service and the availability
of hospital beds. In stage two, the effort is on working to improve
the delivery system and customer satisfaction. In the third stage
of development, there is consolidation of managed care companies,
in which lower cost is a goal. Companies need to design programs
that will make their customers healthier than their competitors'.
Managed care is beginning to explore using technology to influence
decisions and behavior. Managed care providers all give information,
but they want to provide it when it is needed in a format that
helps the patient. Human behavior is changed through repetition,
which new technologies can do on a very targeted basis. Navigation,
credibility, and volume are the three important components of
an effectively designed information delivery system. Incentives
for payers, physicians, and patients must all be driven in the
same direction. The goal is constructive change.
BUT IS IT NEWS? CHI AND THE MASS MEDIA
Bill Silberg, Journal of the American Medical Association, Moderator. Joel Greenberg, Los Angeles Times, and Doug Levy, USA Today, Speakers.
The news media have played their traditional role
in the dissemination of health care information to consumers and
the professional community. This role has expanded and changed
with the rise of new media technology, linked with the reconfiguration
of the Nation's health care delivery system. Journalists must
compete with primary information sources seeking to deliver their
messages directly to the end-users. In the future, providers and
health care organizations should encourage patient involvement
in health care through education and information-gathering and
offering quality information and interpretive sources to facilitate
the process. Policymakers should explore the development of standards
for consumer health care information and its effective dissemination.
Patients should take greater responsibility for their health and
health care decisionmaking. The industry should allow dissemination
of health information at lower costs and with greater utility.
Journalists should examine all challenges raised.
STARTING A CONSUMER HEALTH INFORMATICS VENTURE
PART 1: FINDING MARKET OPPORTUNITIES
PART 2: LEGAL ISSUES ASSOCIATED WITH CHI VENTURES
Panelists: Steven E. Locke, M.D. , Chief of Behavioral Medicine, Harvard Pilgrim Health Care, and Associate Professor of Psychiatry, Harvard Medical School; and Michael Lytton, J.D., M.Sc., Partner, Palmer & Dodge, Boston, MA.
The cost for the development of new digital consumer
health information content is a formidable barrier that must be
overcome through the creation of public/private partnerships and
consortia. Technology companies and network providers must develop
an infrastructure that can simultaneously support entertainment
and health services. A private and public sector partnership could
regulate use of copyrighted intellectual properties by implementing
an electronic watermarking and metering system, thereby simplifying
the rights and permissions process. The entertainment industry
may help develop content and help integrate health products with
those products people use every day. The Federal Government can
help by providing free access to its vast holdings of health information
in electronic form. A single supplier (for example, a cable company
or a large HMO) may be able to provide customers with a unified
interface to a number of disparate products.
Michael D. McDonald, Dr. PH., Director, Health and Telecommunications, The Koop Foundation, Inc., Moderator.
The parties at this conference have different goals:
enhancing the quality and scope of CHI, improving the system and
access to it, empowering people to live better lives, and gaining
a fair return for overall uses. However, those in need will be
some of the hardest to reach and involve. The key factor in our
work in consumer health informatics will be finding the balance
between competition and collaboration.
Robert G. Blank, Jr., Director of HealthCare, Personal Online Services, AT&T.
In the Information Age, the health paradigm has moved
toward giving power back to the individual. We need to have the
ability to put information into a system for consumers. At the
same time, information providers are concerned about their ability
to hold onto their market share, which means developing applications
that people will use. Consumers want to resolve problems, sometimes
a matter of life and death, and those of us in informatics must
provide them with the information to facilitate decisionmaking.
Over the next 20 years, we must emphasize the ability to communicate
simply and educate the population. Alternative medicine and getting
in touch with the spiritual aspect of health are other important
Linda F. Golodner, President, National Consumers League.
In a community-based health information project,
we found that training and support were two of the most important
things we could give people who had not been online previously.
We have to make sure that the revolution in technology works with
the health care system. Among the recommendations in this area
are that we keep better records of outcomes and statistics, so
we know what is going on with the consumers. We need to make sure
that we listen to consumers and place more emphasis on the consumer
at the individual level. And finally, we need to realize that
getting information online is a learning moment for consumers.
We must do more than just put information up on a site.
Peter R. Seaver, Vice President, Health Care Policy and Advocacy, Pharmacia & Upjohn, Inc.
Research is our reason for being, our only enterprise,
but we have a long way to go toward the technology that needs
to be developed in this area. We must take the patient's needs
into account. We must be careful of what we say, when we say it,
and whether we have authority to say it. With this technology,
people may connect with one another and build our communities
up again. From an ethical perspective, health care needs a sense
of community and must be based on managing the total patient.
We need concepts of stewardship and justice so that the system
works out fairly for everyone.
Admiral William R. Rowley, M.D., Commander, Naval Medical Center, Portsmouth, Chairman of the Military Health Services System 2020, U.S. Department of Defense.
The first phase of American health care was medical
problem-oriented and based on unstructured fee for service. This
grew too quickly and too many people were left uninsured. During
the second phase, we implemented managed care. This will leave
us with an excess of physicians. America still focuses too much
on illness, waiting until someone gets sick and eliminating those
negative factors that affect them. In reality, medicine itself
can only make a small contribution to reducing premature death--perhaps
10 percent of the potential reduction. About 50 percent of early
death involves lifestyle behaviors. We must begin to put money
into the system to keep people well. Now we need to enter a phase
of health status improvement, aiming for a high level of physiological,
mental, emotional, and spiritual health. Those of us working in
consumer health information must provide communication among multidimensional
caregivers and help motivate people to manage their own health.
In the future, we must approach health from a global perspective,
starting with taking responsibility for our own health, then the
health of communities, and, finally, ecological health.
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