Response Panel and Open Discussion. Tom Linden, M.D., Moderator

Response Panel and Open Discussion

Introduction:  Claude Earl Fox, M.D., M.P.H., Deputy Assistant
Secretary for Health (Disease Prevention and Health Promotion), U.S.
Department of Health and Human Services (HHS)

Moderator:
Tom Linden, M.D., Co-Author "Dr. Tom Linden's Guide to Online
Medicine (McGraw-Hill)

Speaker 1:
Gary R. Gunderson, Director of Operations, Interfaith Health
Program, The Carter Center

Speaker 2:
Carla J. Funk, Executive Director, Medical Library Association

Speaker 3:
Richard G. Rockefeller, M.D., Ed.M., President, Health Commons
Institute

Speaker 4:
J. Keith Green, President and CEO, Patient Education Media, Inc.,
Time Life Medical

Speaker 5:
Perry Jurgens, Vice President and General Manager, Creative
Services, IVI Publishing


* Dr. Claude Earl Fox *

As we bring the individual networking to a close we will begin the
next panel.  This panel will help us view how the public perceives
health.

We have an excellent panel.  Our moderator, Dr. Tom Linden, is a
physician and journalist.  He has worked in TV and radio, as a staff
writer for a newspaper; he's the co-author of "Dr. Tom Linden's
Guide to Online Medicine" one of the first guides published about the
health and medical resources on the Internet.  He was a child
psychologist before turning to media and writing.  Dr. Linden's
degree is from the University of San Francisco. 


* Dr. Tom Linden *

Thank you, Earl.  It is a pleasure to be here.  As Earl
mentioned, I come here with a background as a physician and
journalist, so I am a skeptic -- not an evangelist -- online.  I
question what is said here.  The Internet is still an isolated
phenomenon.  It's a new service and is not widely used yet.  A study
done by Neilson -- the people who do the TV ratings -- found that
only 11 percent of people age 19 or older are "active" online --
"active" meaning that they have been on the Internet once in the
past 3 months.  The actual number of regular users who are 19 or
older is 5 percent or less.  It is a small but growing number.

The real questions are, "Can we meet the needs of the consumer?  Can
we answer the questions they are asking or need to be asking?  How
can online communication succeed where TV, radio and newspapers have
failed?"

All you have to do is turn on the TV and see a 60 or 90 second relay
of health news.  The media's job is to provide perspective -- not
just information.  Non-interactive media has failed.  It is now up
to interactive media to see where it can succeed.  The public is
more confused now than ever.  Are we going to confuse people more or
are we helping people understand health care better with all this
information?

I have four points that the health media should adhere to:
 - ease with which it can be used,
 - its cost,
 - its entertainment value -- because it must be entertaining or
people won't read it,
 - the quality of information it provides.
And I will add a fifth, and that is:
 - guides on what to do with the information once you get it -- how
to interpret it for your personal health care.

I will introduce each panelist as they speak.

Gary Gunderson, is the Director of Operations, Interfaith Health
Program, for the Carter Center.  He works in California with 20
groups in collaboration with public health facilities.  He is an
ordained minister and has experience working in Africa.  I welcome
Gary to the panel.


* Gary R. Gunderson *

I am feeling somewhat like a low-tech Luddite!  I want to make
specific comments to set in context and to remind us what the health
risks are for premature death.  I want to show the overwhelming bias
towards the individualistic view of what a human being is that is at
odds with the way we live our lives.  And finally I want to show
that religious communities can act as community health providers.

Since we are in the middle of the professional basketball playoffs
right now, let me use a sports analogy about basketball.  The
defense focuses on defending the basket first and foremost.  The
team works on developing fancy plays and dribbling.  Defensive
health focuses on what causes premature death.  A winning strategy
is to have a strong defense before you try intricate actions.  You
have to go beyond what shows up on the death certificate to find out
the cause.  Excellent research has been done, especially by my boss,
Dr. Foege with Dr. Michael McGinnis.  They have
extrapolated the causes of death from their research.  The major
causes of death are as follows: 400,000 people have died from
smoking, 300,000 from alcohol consumption, 90,000 by injuries from
firearms, 35,000 from sexual behavior -- most specifically from
AIDS, 30,000 in motor vehicles, 20,000 from substance abuse.
Because the risk factors are overwhelmingly behavioral and
overwhelmingly preventable in principle, you would think that people
would choose better -- healthier -- behaviors.  What is the
relationship between knowledge and action?  This is the critical
thing we must begin to understand.  But anyone who thinks we can
dictate these changes based on knowledge has never met a human being!

Be realistic about it.  These individuals do not chose their health
as "individuals."  We are not just individuals -- we are social
creatures.  Most of the important health care events in our lives
occur before we are old enough to make health decisions alone.  This
is critical to realize.  By age 6 our mental, physical, emotional --
and some would say spiritual --faculties are developed.  We keep
living the way we are raised.  It is very clear that rational
response to data is only one way in which we make decisions on
health.  The leading causes of death are made from a network of
decisions over time.  Short term rational choice is only a part of
the picture and may be the least of the information that shapes our
decisions.

Health decisions are shaped by the health industries wanting to make
money off of us.  Premature death manifests itself quite
differently.  People who have access to money do not necessarily
have good health across time -- even across generations.

It is quite possible that our information strategies could be one
more factor that separates the rich and poor -- one more element
which marginalizes groups and makes information further out of reach
for some.  The attitude that persists is: "I can take care of
myself."

Very little information is received from providers.  But how you
reach a marginalized individual is a concern.  It is only possible
reach them through someone -- like a local religious community leader --
who respects them regardless of their status.

It is more difficult for me to imagine building information that
will reach all races and people in different economic situations,
than it is to imagine compassion built into the health information
distribution.  But if there are people there that can access the
information and could serve as a trusted gateway to the information,
then individuals would trust the information because they would be
receiving it as a part of the community that accepts them.  Just
like in churches.  This is likely to be an important factor in social
institutions.

Social and advocacy capacity, these are critical community institutions
in a society that creates marginalization to begin with.


* Tom Linden *

I'd like to introduce Carla J. Funk.  Carla is the Executive
Director of the Medical Library Association.  She previously worked
for the American Medical Association.  She is the President of
Illinois Library Association, and she is an active member of the
American Association of Medical Executives.  Carla is an adjunct
faculty member of the Rosary College of Library Science.
She received her Doctorate from the University of Chicago, and her
MBA from Indiana University.  Specifically, I hope you can answer
what is the unique roll of libraries in dispensing information and
how can the stakeholders use the library to help them dispense
information and do their job better, and what can the stakeholders
here help you with in order for you to do your job better.  Thank
you very much for coming.


* Carla J. Funk *

Thank you Tom.  Libraries make health information easy to access and
understand.  They are accessible to a wide range of people.  People
are usually engaged with health issues when their health is on the
line, and we are concerned about the quality of information which is
received.  We help consumers learn what to do with the knowledge they
gain and where to go next.  We are a bridge over and onto the
information highway.

Here are some scenarios I've experienced.  A man needs to know the
names of heart surgeons.  A surgeon needs detailed information on a
procedure.  An 8 year old needs to know the effects of cocaine on
the human body.  A community wants to distribute information on an
outbreak of measles.  A young girl with diabetes needs a doctor
right away and her doctor is out of town.  All these examples are
where librarians can help members of a community.  All are issues I
have addressed as a librarian.

Today consumers are taking charge of their health.  Libraries are
providing and improving health information more than ever before.  We
bring information to the electronic age with access to lap tops and
computers.  We help overcome access barriers to information --
educational and language barriers, emotional and physical barriers.
We tap a variety of resources in order to help those with barriers
cope with their problems.  We deal with the information rich and
information poor.  We are experts in information- seeking behaviors.

Libraries have been active in improving information access since the
1970's.  In the 1970's, I was involved in the library system providing
health service information.  We needed to cooperate with many others
because we had a large public to serve.  The following are examples
of ways we have increased public information access.  With public
and state libraries the funding for all libraries was initially
provided by grants or local community contributors.  The "Plaintree"
system in California and the first information network in the Boston
area were established in the 1970's .  The University of Cincinnati
system was developed with a variety of partners such as the
government and self-help groups, as well as for-profit
organizations.

Other examples abound nationwide: the New York Public Library
community organizations and group, the Georgetown University Medical
information program, the University of Utah's electronic
connections.  Chicago has helped provide consumer health
information.  The University of Pittsburgh Medical Center provides
information in the airport as well.

We not only deliver information, but we also customize it to the
consumer.  And increasingly we train and educate the care providers,
patients, and the consumers.  We are trained in the ways to market
the product.  We feel that by teaching people to teach themselves,
they can become better health care consumers.  We want to reach not 
only people who are sick; we want to reach people who are well.

The Medical Library Association has stressed information
distribution -- not only of printed materials, but electronically as
well.  Connecting between libraries and between communities, we
encourage meetings of self-help groups at medical facilities.  The
library associations are working in an advocacy role for
individuals' rights to unrestricted access to the information on
human health and services.  Libraries are active in pushing for
better access by improving the laws, and are pursuing funding from
the Health Communications Act.  Libraries are also working hard to
that ensure medical information access is freely available for
medical purposes.  Another area of focus is on the copyright laws.
This is another one of the barriers to information access.  We are
trying to ensure that medical images are available for tele-medical
purposes.

Ask your librarian in your area to help you.  They are an invaluable
resource.  We want people to come to us for help.  Librarians are
active as well.  The library has a health and human services
section.  It has a Web page which provides access to health care and
treatment for specific diseases, and access to certain resources.
We have always been actively involved in electronic communications.
We hope to link with as many people as possible.  In addition, the
Library Association has actively published in our journals recent
medical advances in order to highlight consumer and patient
education -- something which is so vital today.


* Tom Linden *

Dr. Richard Rockefeller is President of the Health Commons
Institute.  He works to make the health profession computerized as a
way to promote cooperation between patients and doctors.  Under his
leadership the first ever conference in this field was held.  He
maintains a part time medical practice.  Dr. Rockefeller earned his
B.A. from Harvard University and his M.D. at Harvard Medical Center.
Richard Rockefeller, thanks for joining us.


* Richard Rockefeller *

One of the oddities of speaking on a response panel is that I get to
write my talk while others are speaking.  A disadvantage is that I
don't know how long it will take.  My hope is to add a useful
perspective to the subject of online delivery of information to
consumers.  I've spent my time working on the issue using Larry
Week's "problem-knowledge couplets" that Tom Fergusen mentioned last night.  I've been
working inside the "black box" that was referred earlier -- the
place where the patient and doctor come together.  The "black box"
is an area left sacrosanct to the physician alone, and there is a
lot that can be improved inside of that "black box."  In my
investigations I have come upon a different landscape of
possibilities for health care.  I will give examples as I go along.
I had been using these tool with patients, but as Larry has a habit
of telling me, you can't tie your shoes while running -- you have to
stop and work on the basics first.  And that is why I created the
Health Commons Institution to move this work forward.

As a result I have been working inside the health black box.  It is
not only the patients that are overwhelmed by getting a slew of
knowledge -- the doctors are as well.  And when the patients are
more informed than the doctors -- they quite rapidly surpass the
knowledge of physicians -- the doctors are obviously in an
embarrassing position.  We are apt to say, "Well tough -- eat it."
But not only is it embarrassing, it is not a helpful position for
the patient either.  Doctors need the correct and complete
information when we see patients.  We need the information at the
time when we see the patient.  Otherwise we will continue to be
ships passing in the night.  It can make the relationship even worse
than it is -- despite the studies being done showing that when the patient
is more informed about health care, the patient will get better care.  
One unintended consequence, however, is doctors get burnt out faster.

The issue is not of delivering information, but surpassing it.  When
we get knowledge off the Internet -- or raw knowledge -- it's like
being handed a bushel of wheat when we are hungry and want a
sandwich.  A great deal of knowledge comes in this manner.  When we
listen to patients' problems dealt with online, they are generally
those with long term problems -- not the patients that have acute
problems.  Eventually we will possess tools that are going to be run
online, but at the moment the tools are off-line and in the doctor's
office. What we need to do is couple the knowledge of the literature
with the specifics unique to the patient's condition.  Hence the
name "problem knowledge couplets" as they are called.

One of the questions raised is "When is the due process of
information a more complete process?  The question is "What does the
sandwich that I seek look like?"  The fear is that you will go out
of business.  You won't get the answer to the question you have when
you turn to the computer for answers.  More often you get more
confused.  "More detail equals more fuzziness."  The more detail you
acquire, the more questions that arise, and the more fuzzy the
picture becomes.  The effect of gaining more information is that
there is a greater perspective, but a higher level of uncertainty.
You may end up feeling that you don't know what you are doing, but
you come to the conclusion at the end about what to do next.
Arriving at conclusions requires prior work between patient and
doctor.

I encourage more face-to-face interaction between the doctor and the
patient.  When the doctor sees the patient face-to-face, the doctor
can get a better feel for the specifics of the patient's ailment
right in front of the doctor, and the doctor can work on the unique
situation of the patient using his or her skills.

There are many techniques for forming these dual partnerships
between doctor and patient.  One of them is that the partnership
should engage the physician and patient in the optimum roles.  The
physicians have experience, have judgment, and should play a
leadership role in behavior changes in the doctor-patient
relationship.  Patients may have a Ph.D. in their personal
situation, so the partnership must optimizing each of their own
strengths.  There is actually a three-way partnership with the
computer.  During a visit to the doctor, there are meaningful and
helpful interactions between the patient and doctor in a short
period of time.  There are surprising diagnoses that the computer
has suggested that I didn't know of before.  What we think we see in
the information can actually enhance the problems.  For example, the
hypochondriasis of patients is hardwired into the patients.  When
they see the number of illnesses that their symptoms show -- that
there are 55 different diagnoses -- they wish to do it again because
they see that there are so many diagnoses.  When I enter in the
symptoms again, I've had a number of patients who don't take it up
again and just quit somaticizing.

The question is now where do we go from here?  I encourage
partnership with another institution.  Partnership is as big as the
institution here.  It is very hard to do, but simply becoming
familiar with the benefits and the idea is useful.  A key point is
that we must keep focused on cultural change.

The final point is to keep a close eye on patient's medical record
because guidance of information is given by complete medical
records.  Kaiser and others represent efficient holdings of medical
records, but many do not.  When they do, guidance tools will become
much easier to institute over time.


* Tom Linden *

Our next speaker is Keith Green, the CEO of Patient Education Media,
Inc., Time Life Medical -- the group that has created the Time Life
videos.  Time Life Medical has created numerous health resources,
including online services.  Keith received his degree from Syracuse
University.


* J. Keith Green *

Those of you who are doctors -- the health care professionals --
please raise your hands -- and keep them up for a minute.  Now those
of you who are working for non-profits.  That's just about everyone
here.  Time Life is a for-profit organization.  90% of my time is
spent on Madison Avenue.  The people I speak with are often not
interested in what I'm saying, and I only had 30 seconds to do it
in.  I am certainly happy to be here today.

We are entering a socialist-like publishing state.  Anyone who wants
to  publish can do so.  The key now must be quality.  The key is
brand recognition because consumers trust them and flock to them.
Building successful brands is not rocket science -- it's harder than
that.  It's hard, hard work.  A brand is a contract between the
company and the consumer.  With that contract comes both
opportunities and responsibilities.  Our brand has the following
core values: accessibility -- getting into 20,000 drugstores;
accuracy -- this goes without saying; ease of understanding -- do it
at an 8th grade level; and medical authority.  We also think we must
state our purpose up front.

Make sure you judge a company by its commitment to keep its contract
with the consumer.

It is now time that people have this information.  Now that the baby
boomers are reaching their mid-50's, there is a health care crisis.
It is easy to see that boomers will start demanding even more
information.  We did not predict that the boomers were so well
informed.  There must be a label and detailed information printed on
every product consumed.  We are making decisions for enlightened
consumers.  We are part of mass medical communications -- not mass
media communications.  What health care doesn't need is junk
information.  The lines are blurred between what is unnecessary
information and what is medicine.

I want to say a few words about the money being spent on information
online.  The press is not on track when it is worrying about the
financial outcomes -- social outcomes are the biggest problem.  $1.1
trillion is spent on health care.  The medical community have a
chance to make an impact on one-quarter to one-third of the
populations seeking information on the subject.  But why video?

It's ease of use.  We have to get the information right back, and it
better be entertaining.  But it needs to keep them focused.  There
has to be a way of making a difference in this area and for it to
stick, or there will be no impact.  The TV is in 90% of US
households.  It allows for communication within households.  We
have received thousands of letters from people who have watched our
videos.  Our first letter says, "Thank you for your video -- now my
husband understands what I'm going through."  Try to think of videos
as training wheels, because it isn't interactive.  Don't discount TV
because of all the 30-second sound-bytes offered on evening news.

We need the industry to start self-regulating.  Thomas Jefferson may
have started the freedom of information in this country, but we can
finish it.


* Tom Linden *

Our next speaker is Perry Jurgens, the Vice President and General
Manager of Creative Services for IVI Publishing.  IVI Publishing
publishes health and consumer information for the public and they
are integrated on the Internet this year.  He received a B.A. in
Finance and an MBA from St. Thomas.


* Perry Jurgens *

If there are the four P's of marketing, there are also the four P's
of health care:  patients, providers, plans -- i.e., the insurers --
and the peers.  IVI Publishing could be the fifth P in publishing
materials and packaging.

What are we really trying to accomplish?  The consumer is being
challenged to be more responsible for managing their own health and
that of their family.  We baby boomers are entering a time for us to
take care our parents.  I see that my children are now adults --
what an exciting thing that is.

There is a tremendous demand for information from a newly diagnosed
patient.  That demand activates 10 nanoseconds after leaving the
clinic.  They are asking the question "What do I do next?"  The
information is there in a variety of formats.  Those of us who deal
with disease management know the value we place in trust and quality
of content.

A category we are aware of is the "worried well" --  people who are
generally healthy but are concerned about cholesterol, etc.  This is
a small portion of the total group.

Another category is the elderly.  A new participant on Internet is
the newly retired.  I'm excited that when we get older we can
migrate onto the information super-highway.

What is going to motivate those who do not fall into these
categories of interest?  How do we engage the 80% of the people this
represents -- those who see themselves as healthy until the day they
wake up and find themselves ill and wanting information?  We want
them to seek out information not after-the-fact of having health
problems, but before it -- to be aware in advance of the problems
they may face.

We need to look at the various organizations that want to make an
impact and how they are trying to make that impact.

On the chain of delivery of information the first level is access.
We have talked about the access issue greatly today.  It is in our
churches, libraries, homes, hotel rooms, etc.  It must be reliable.
It mustn't give an error message that makes you need to look up the
problem in a book.

Speed and consistency is an issue -- how to relate the information
gives to you.  The Internet is disruptive because the information
comes at you too slow or fast.  It lacks consistency.

Navigation and use is very important.  Not only should it be elegant
and easy to use and entertaining -- but you need to know where you
are.  Isn't it nice to be on the Internet -- or in a book -- and
know where you are and how you got there?

Trust comes with brands -- as we've seen already this morning.
Others in the community of health are going to focus in on this.

Finally and most importantly the feeling of community is a strong
value.  I want each of you to think about how important it is that
we have relationships with our doctor, with other patients, etc.

I for one am excited to be a part of this new future.


* Question and Answer Session *

Q: Can you give some ideas on how help from online communities can
support religious communities?

Gunderson:  There are interesting models where the community
organizations are reaching out to ecumenical networks "in the
streets," and we will migrate on line to enhance this effort.

Q: As someone who is facing a chronic illness I want to tell you
what we want and don't want online.  We don't need more graphics,
because this is not entertainment for us, this is serious business.
What do we want from providers?  We want honesty.  You listen to
my body and tell me exactly what it is saying.  We want to be
listened to and we want to meet with our doctors face-to-face.  I
work with chronically ill people and the truth is we don't have
choices about doctors.

Linden:  Thank you for sharing your real life experiences as someone
facing a chronic illness.

Rockefeller:  I don't have much to add.  It is a well founded
comment and it's a difficult thing to be the physician that our
patient wants us to be when they are chronically ill.

Q:  My name is Debbie Holden, and I'm from Eli Lilly.  I have a
comment and question for Keith Green.  I'm very pleased with the
patient education materials you have made available.  I have a
question about the possible negative impact which could result from
the partnership between pharmaceutical companies and medical
centers.

Green:  I have no negative attitudes toward these alliances.  But I
think is imperative that patients understand exactly what the source
of the information is and need to be aware of where this information
is being made available from.  All I am asking is that the company
involved in producing information state its agenda, and let the
patient make the decision for themselves about whether the
information comes with a bias.  I've seen some patient materials
which are excellent.  And I've seen some that are advertising hidden
under the "sheep's clothing" of educational information.  I want
there to be a clear difference between the two.

Linden:  I've been in journalism for a number of years, and until
recently there was a clear distinction between editorial content and
advertising. Online this is not the case, and it is increasingly
difficult to pick up a difference.  That demarcation is getting very
fuzzy.  Please comment on the possible quagmire that we are getting
into regarding the commercial providers funding educational material
and difficulties for consumer being able to tell the difference
between ads and information.

Funk:  Librarians have a real role here in establishing quality
control and acting as a filter of the information for the consumer.

Q:  I would propose that there be a part of the evaluation of our
work answering the question "Are we making a difference?"  How are
we measuring outcome and impact?  Are we changing behaviors?  What
are the measurements that are being used to evaluate these efforts,
and how much of a change are we bringing about?

A:  Support tools do not have built in evaluation components.  One
can only assume that knowledge does make a difference, or one can
assume that knowledge doesn't make a difference.

Q:  I have a question for Perry.  Is it more effective to have the
information online or in video format?

Jurgens:  When we began this, we realized that anything that ought
to be done is probably already being done somewhere by someone.
During our investigations we found that the barriers between
disciplines and those of geography are major barriers.  We put
everything that we print onto the Web, and we try to get as much
information flow as we can.  But it is a very sloppy process.   It
is scary when we think that we know what community leaders need to
know.  Those are the entrepreneurs -- the people at the community
level -- and we are hoping that we can connect with those people.

Linden:  The Internet is now a video medium.  Why do you think that
video will succeed when waves of television have failed?

Green:  I believe it will succeed because of there exists a critical
mass of users.  We know have a core of 30 titles, and we send them
to the drugstores and require them to take them all when we know
that some will fail.  We send them to 20000 stores.

Linden:  One last question -- how many information servers do you
think will survive?

Jurgens:  I would say three to four -- or possibly two to three.
That would be my guess.