A Guided Tour of Self-Help Cyberspace, Tom Ferguson, M.D., Senior Associate, Center for Clinical Computing, Harvard Medical School

 

Introduction by Mary Jo Deering:

One of the fathers of the field of consumer health information is
Tom Ferguson.  He is currently a Senior Associate at the Center for
Clinical Computing, Harvard Medical School. He is President of
Self-Care Productions, a healthcare consulting firm in Austin, Texas.

I know many of you know Tom and have attended his conferences and
benefited from his contributions to the field. His new book, Health Online, 
is a comprehensive guide to self-care resources on the online networks.

Tom founded the influential journal Medical Self Care. He wrote a
chapter on the empowered health consumer for the book that accompanied 
Bill Moyers' Mind-Body Medicine series on Public Television  It's very
appropriate also, as an indication of his contributions to the field,
that John Nesbitt has referred to his work as representing "the
essence of the shift from institutional help to self-help."

Please welcome... Tom Ferguson.

Thanks very much for that nice introduction. Mary Jo has asked me to
welcome you here this evening with a few informal remarks about some of the
adventures I've had over the last three years-in the course of
researching and writing a book on online health resources. So for the
next hour or so, I'd like to try to give you an overview of my
perception of the state of the art of online health information for
consumers, including the very important role of self-help communities
in cyberspace.  I'll be talking about the new and rapidly-growing field 
of Consumer Health Informatics. You can think of it as the study of consumer 
interfaces in health care systems.

As a rough rule of thumb, you can divide the field into two sectors:
*(1) Community-based Consumer Health Informatics resources-These are
services available to anyone from their home computer, and
*(2) Clinically-based Consumer Health Informatics resources-These
are systems provided to a limited population of patients or clients--
usually by an HMO or other health care provider organization.
Examples of community-based CHI resources would include files and
databases and programs and people-to-people bulletin boards and chat groups on
America Online and CompuServe. It would include the thousands of
health-related USENET newsgroups, the thousands of health-related
e-mail mailing lists, hundreds of health-related freestanding
computer Bulletin Board Systems (BBSs), the ever-changing world of
health-oriented Internet Relay Chat (IRC) channels, as well as the
more than ten thousand health and medical sites currently available
on the World Wide Web.  Examples of  Clinically-based CHI resources 
would include home health workstations, decision-support interactive 
software, diagnostic spreadsheets designed to be used by patient-clinician
teams, programs for short-term psychotherapy, provider-patient e-mail, 
hospital and HMO web sites, and a number of other ambitious programs that 
aspire to link the home with the HMO or clinic, including many that are
still in development.

Most of what I'll have to say this evening will have to do with the
community-based resources. But I'll save some time toward the end to
make a few comments on some of resources that are being developed on
the clinical side as well. 

Lay Users Take the Lead
I almost hate to admit how many hours I've spent over the last three
years looking at what happens when consumers go online for health purposes.
I think that as health professionals we're at a disadvantage in
learning about this area. We're already behind because we were taught
that we can learn all we need to know about health care from other
health professionals, not from our patients. But in this area, it's
frequently our lay colleagues who are doing the most pioneering work.
Now let me identify two different consumer populations among those
who use online health resources. First, there's the online newbie who's not
particularly familiar with what's out there. And second, there's the
veteran online self-helper, who's comfortable with the Net culture,
has been using these resources for a year or more, and typically logs
on to his or her regular haunts several times a week. I'm
particularly interested in this second population-the veteran online
self-helpers-because I think their patterns of online behavior are
typical of what we're going to see consumers doing in the years to
come.

So what do these veteran online self-helpers do online? Above all
else, they communicate back and forth with other people. They send 
and receive e-mail. They read and contribute to the online mailing 
lists that cover their areas of concern. They visit the discussion 
areas on the commercial services and the newsgroups. And many attend 
scheduled or ad-hoc love chat groups that in many cases serve as online 
support groups. They sometimes search for information by doing a search of
the Web or by subscribing to an inexpensive news service to help them
keep up on their areas of interest. And increasingly these days, they
may create their own mailing list, Web site or other online resource.
But above all, they exchange experiences and opinions which others
who share their special concerns.
I wanted to give you a bit of the flavor of the topics these online
support groups cover, so I picked ten groups at random from a more
extensive listing on the Better Health and Medical Forum on America Online.
Here they are: A sampling of support groups from AOL:
Gamblers anonymous - 10 am
Recovery Link brunch - 11 am
Senior Net diet club - 11 am
Serenity (AA) - noon
Dissociation support - 1 PM
Young Adults - 1 PM
Herpes Support - 3 PM
Depression Support - 3 PM
Haven (general mental health) - 4
Friends/Family of patients w/ADD - 6 PM

These groups typically meet weekly in a virtual online "room."
Meetings are typically attended by half a dozen to twenty-three 
individuals who are all logged on at the same time. Each in typing 
in his or her messages, and all the messages appear in the on-screen 
window that represents the room. The room capacity for most chat rooms 
on AOL is 23. Above than number, things can get a bit chaotic. In fact, 
even with ten or twenty active participants, the rapidly-advancing
on-screen transcript of the meeting may appear totally confusing to
the inexperienced visitor.

As you look at the list of groups, several things pop right out at
you: 
First of all, the topics don't exactly fit into our usual diagnostic
categories. That's because these are grass roots groups, started by
folks who met on a forum or mailing list and decided they wanted to
have a live support group. So they organized themselves and came to
the forum host and said, "we'd like to have a chat group on this
topic." And they convinced the forum host and tried it out, and it
attracted a critical mass of regular participants. So they're still
on the list.

Not all of these will continue as permanent groups. There's a high
level of turnover and change. I had to go off-line for several weeks to
rewrite my first draft of my book, and I couldn't believe how much
things had changed six or seven weeks later when I logged on again.

Finding Help & Support in Cyberspace
Now I'd like to quote a couple of actual online interactions to give
you a sense of the flavor of the conversations that occur in these
online communities.  The first is from a death and dying support
group on CompuServe. 
From: 
Jack in Utah To: All
My son recently strangled himself trying to make a Halloween
haunted house in our garage.  I'm not all that sure that I can talk about
this here, so don't be surprised if I disappear.  I'm having a hard
time typing. I look at the screen and see my son dying.  No one knows
exactly what happened, but my brain has made up a scene that keeps
flashing into my mind.  I had never let myself realize just how much 
I loved him, and now he's gone.  I never ever would have thought that 
this could hurt so much, or that I would miss him so badly.  My wife 
and I have been seeing a therapist and from what she says, after almost 
three weeks, we may still be operating in shock and this could get worse 
before it gets better.  I'd like some insight into this shock business: how 
do you know if you *are* in shock, how do you know if it's wearing off, and 
what does it feel like when it does wear off?  We've been told to take it easy
and let this go at it's own pace, but I can't help wondering if there isn't there
something I can do to speed up the process?  Any help would be much appreciated.

Jack received several dozen responses over the next 48 hours. The
high levels of empathy and understanding and support in the responses were
very impressive. Indeed, this may have been the best possible group
of people to whom Jack might have turned for help. They are all
active participants on this board because they were currently dealing
with similar  issues. Here's one representative response:

Dear Jack,
There're no words to express the sympathy we all feel-for you,
for your wife, and for everyone who shared in the loss of your son. 
I've been there too-several years ago, I lost my dear sister to murder.  
For awhile, I didn't think I could go on. Here are the four most
important things I learned from my own experience of healing:
1. Don't drink or use drugs-and I mean not at all.  (I'm not talking
about medicines prescribed by a doctor). Remember that alcohol is a
depressant-something you don't need even one drink of right now.
2. Continue with your therapist, even though your sessions
are painful. If she suggests an antidepressant medication, you should
seriously consider it. If you have other children, be sure they get
help too.
3. If you're involved in a church or other faith community, see if
they have a grief support group. And if your tradition includes
healing prayer or services for the dead, use them to help heal your
grief.
4. Above all, make a pact with your wife to be extra kind to each
other. Never, never blame each other for your son's death. For the
next few months, your relationship will be under the worst imaginable
stress. Sometimes people are so desperate to stop the pain that
they'll do anything-even divorce. But even that doesn't stop it. It
just adds more problems.  So be kind to each other. You 've both lost
so much.
Wish I had the magic words.
P.S. There's a wonderful support group called Compassionate Friends
for parents who've lost a child.  To find the nearest chapter, call
(708) 990-0010. 

This is a fairly typical example of the high-quality responses
people receive when they reach out to online self-help groups for support.
I recently had an opportunity to cite this case example at a medical
conference in New Orleans for psychologists and psychiatrists. After
my talk, two very distinguished therapists came up to talk to me.
They'd been asking themselves the question:  "If this person had come
to us as a patient, would we have been able to provide the same level
of good help and support he received from the self-helpers he found
online?"  And they had decided, in all humility, that although they are 
both very well trained, highly-respected therapists, that they probably 
would not have been able to help him in nearly such an immediate,
compassionate, practical, and powerful way.
Now not all the interactions on the online support groups are this
helpful and this wise. But many of them are. I must say I've been very
impressed by the ability of these online communities to provide
high-quality information and support on both the emotional, and on
the practical level. And they're often, though not always--quite
impressive on a purely technical level as well. 
The Brain Tumor Mailing List
I'd like to read you another excerpt from a self-help group leader.
Samantha Scolamiero was a student at MIT, a young woman in her early
twenties, when she  was diagnosed with a massive brain tumor. She was
not happy with the diagnosis and prognosis she received from her
original physician, so she went online, and, among other useful
resources, found a medical center that was offering a new procedure.
She went there, got a different and more hopeful prognosis, and had a
very satisfactory outcome. Her tumor turned out to be benign and the
doctors at the new center were able to remove it.  After she recovered,
she decided to create an online resource for others with brain tumors. 
She describes her experience as follows: 
As a brain tumor survivor, I began BRAINTMR (The Brain Tumor Mailing
List) in 1993 with the simple hope of helping people concerned with brain
tumors share information and experiences. In less than two years
BRAINTMR has moved far beyond that initial vision.  Of our 650 members, 
roughly three-fourths are patients and family members.
We layfolk share information and advice about the best medical
centers, about little-known clinical trials, nutrition,
rehabilitation, alternative therapies, doctor/patient relationships,
and other resources on the Internet. Patients use printouts of list
messages to get their doctors to help them sign up for the latest
clinical trials.  The issues and problems we deal with on the list are
more immediate and useful than information gathered from books, articles 
and other sources. The list helps to ease our isolation and depression and
provides us with a coping strategy for difficult times. People who
might be intimidated by face-to-face meetings can participate in a
friendly, non-clinical, mutually-supportive exchange. BRAINTMR is a
welcome haven for those with no local group. And with adaptive
input/output equipment, even the seriously disabled can participate.

About one-fourth of our members are neurosurgeons, nurses,
psychologists, epidemiologists, pathologists, social workers and other 
clinicians and researchers. Our doctor members have told me that monitoring
the list helps them understand the specific physical, emotional and
spiritual needs of their patients. Such insights can be difficult in
the midst of a busy clinical practice.  Countless printouts from our list 
circulate among brain tumor specialists.  One list participant, a faculty 
member at a major U.S. brain tumor research center, routinely forwards list
messages to forty-eight colleagues. Armed with our printouts, an oncologist
in a developing country convinces colleagues to try new treatment options.
By breaking down the rigid social boundaries between doctors, patients, and
researchers, the Brain Tumor Network is pointing the way toward a new
type of participatory medicine in which all those concerned with a
given health problem can work together as colleagues. List members, 
layfolk and professionals alike, have moved beyond the old, obsolete
mindset that holds that only certain "qualified" medical
professionals may create and disseminate medical information.
We layfolk are learning that we are qualified thorough our experience, 
our knowledge, and our concern. We now see that we are capable of
contributions no professional can make, and that by linking our
efforts in a coordinated team, we can advance the well-being of all.
In looking at the important online work currently being done by
self-helpers such as Samantha, I am reminded of some early research into
indigenous self-help practices done long before the online era by an
important mentor of mine, Eva Salber, M.D., of the Duke University
Department of Community Medicine. Online "Natural Helpers," Eva believed
that there are in every community a small sub-population of people she 
called "natural helpers." To learn more about who these natural helpers 
are and what they do, she did a community survey of a disadvantaged urban
fringe population in a community of about 4,000 people which was served by
the Duke University Emergency Room. One of the key questions she asked was 
the following:
"Who around here do you know to whom people go for advice on health
matters-other than doctors?"
In looking at the responses, Eva and her colleagues found that there
were about 40 people in that community-about one percent of the
population-whose names were mentioned over and over again.
When she looked at who they were, she discovered that they were
strongly altruistic people. About two-thirds were women. They
were more likely to belong to a religious community. Otherwise, they
were not much different from the other members of their community.
When Eva began to observe the interactions these natural helpers had
with their friends and neighbors for the purpose of giving health
information and advice, they found that these forty natural helpers
were providing about as many medical consultations as all the doctors
in the emergency room down the street. With no budget, no special
training, and no acknowledgment.
So when I'm exchanging e-mail with online "natural helpers" like
Samantha, I often find myself thinking back to the natural helpers in Eva's 
study. These new 'online natural helpers" serve as coordinators and
forum hosts and sysops and support-group leaders for many of these
new community-based consumer health informatics systems. I wish Eva
were alive to see it. Online Clinicians-Coaches, not Authorities
So as you can see, these growing networks of online self-helpers
giving rise to a whole new species of activist of health consumer. But
they're doing something else that is equally interesting-they're also 
nudging us in the direction of a whole new role for the online medical
professional.

Earlier this week I was conducting an e-mail interview with Dr.
Carvel Gipson, a Florida-based neurologist specializing in headaches and
headache-related disorders. He serves as a consultant to one of the
CompuServe self-help forums devoted to headaches. Like many other
health professionals who've begun to work with online support groups,
Dr. Gipson has learned to wear a different hat in relating to members
of the online group than he does in relating to a typical patient he
might see in his office. In his medical office, he's often called
upon to serve as an authority, taking charge of the case, making a
diagnosis, and issue "doctor's orders." But he never--repeat,
never does this on the online forum. Instead, he serves as an expert
coach, consultant and facilitator, answering questions, sharing his
knowledge and his wisdom but leaving all final decisions up to the
individual participants.

When I asked him about this special online role for health
professionals, he replied as follows:
Any physician who proposes to diagnose or treat online may be
deficient in judgment.  But there is much that online health 
professionals can legitimately do.  We can answer questions about
the side affects of medicines and about whether certain symptoms 
need to be investigated.  We can identify combinations of drugs which
may pose problems. And we can encourage a closer consultation between
doctor and patient when the patient has been reluctant to do so for 
whatever reason.  It will came as no surprise to hear that the self-helpers
on the headache forum benefit greatly from Dr. Gipson's wisdom and hold him
is high esteem. It may be somewhat more surprising to learn that Dr. Gipson
has also learned a great deal from his participation on the headache forum 
that he had not discovered in his many years of clinical practice. He recently 
e-mailed me as follows:
I've learned so much from the CompuServe discussion group members.
I've practiced neurology for more than ten years, and I've never before
appreciated how many patients are essentially disabled by their
headaches.  It's also become clear to me from my online discussions that most
ptients are much less concerned with a cure than I previously believed. Most
of them have a pretty good idea that this is not in the cards. But they are all
vitally interested in having their symptoms taken seriously by their doctors.

It still amazes me to learn how frequently they are told by their health
professionals that their chronic headaches are "all in your mind," or
given the message that, in essence, "You are a bad person if you can't cope
with this problem on your own."  For the most part, this is not true and the 
patients know it.  If you approach them with the idea that this is an organic 
problem for which we have treatments which, though helpful, may be less than ideal,
they seem much happier.  I've also learned that these patients can benefit greatly
from talking to other patients with the same conditions. These people have all been
there and really know what they are talking about. And I've learned that people with
chronic severe headaches are often surprisingly reluctant to tell their doctors things
they think the doctor doesn't want to hear, including such essential items as how 
they really feel.  Perhaps this goes back to the problem of not being taken seriously 
by their clinicians.

What Online Self-Helpers Find Most Valuable
Another thing I've been very curious about in observations of and discussions with 
online self-helpers is the process of effective online self-help: 
What types of online resources have self-helpers found most useful? I've asked many
dozens of online self-helpers about this, and what they've told me is not at all what 
I'd expected to find. Here's a brief summary of my conclusions about the types of
online processes that online self-helpers find most valuable:

Online Resources-Ranked by Perceived Value to Online Self-Helpers
(1) Responses to my own questions by knowledgeable persons (either
clinicians or self-helpers or both)
(2-Tie) Answers to questions asked by other self-helpers like myself 
with answers by knowledgeable persons (either clinicians or self-helpers or both)
(2-Tie) Results of my own searches for information.  (And this last item is ranked
much lower than those above...)
(4) Typical professionally-generated "patient education" materials--typically
pre-existing printed pamphlets and articles put up on the Web. 
What experienced online self-helpers find most useful is direct,
one-to-one responses to their own questions-and responses to the questions of
others who share their concerns. This came as something of a surprise. I think 
that going into this area of research, I was thinking of the Internet as a sort 
of giant medical encyclopedia of information. But what I've continually found is 
that the thing most regular users value most is active participation in a range of
different people-to-people conversations. As many of them said in so many words, 
they want to be a part of an ongoing conversation within a caring community.  Now, 
let me hark back again to the two different populations I mentioned previously--the
online newbies and the veteran online self-helpers.

The newbie may well still consider the Internet no more than a giant
encyclopedia, and may be perfectly content to click his or her away
around the Web. It's the veteran online self-helper who has learned
to attribute the high rating to person-to-person communications which
lead to ongoing relationships.


Clinic-Based CHI Programs
I'd now like to briefly mention a few of the CHI systems being
developed on the clinical side that appear to point the most important directions
for the CHI systems of the future:

Clinically-Based Consumer Health Informatics systems:
* CHESS--A Home health workstation
* FIMDM--Medical decision support program
* TLP--Therapeutic learning program
* PKC--Problem knowledge coupler
* Bundled Home-HMO Client/Server Systems

CHESS (the Comprehensive Health Enhancement and Support System) from
the University of Wisconsin at Madison,  is a Home Health Workstation for
people with AIDS, breast cancer, and other health problems. It links
people with AIDS to other people with AIDS, as well as linking them
to providers, programs, and a huge AIDS-specific data library. It's a
very nice example of targeting people with high medical needs and
giving them a computerized system which meets all the dimensions of
their needs.

The Decisions Support Interactive Videos for Benign Prostate
Hypertrophy, Breast Cancer, and other chronic conditions, developed by the
Foundation for Informed Medical Decision Making in Hanover, New
Hampshire, are disease-specific systems which help patients take a
much more central role in making medical decisions-with a full
arsenal of informational and emotional support. With the help of
these programs, thousands of patients are currently making such
crucial medical decisions as whether to have prostate surgery or
which kind of surgery to have for their breast cancer.

The Therapeutic Learning Program was developed by Roger Gould, a
psychiatrist who formerly ran the psychiatric outpatient service at
UCLA.  This is a technically simple, yet psychologically quite
sophisticated. This effective do-it-yourself "stress management" 
program accomplishes many of the goals of short term psychotherapy.  
And by the way, I would suggest that the whole area of self-help-based 
mental health software is currently an extremely high-return field for
development and research.

The Problem-Knowledge Coupler is a just-in-time-diagnostic-support
program designed to be used by the doctor and the patient working as a team.
The programs can already make diagnostic and treatment decisions more
effectively and less expensively than most human clinicians. A
patient comes in with a problem and sits down with a doctor and
computer, and engages in a three-way conversation in which the
computer provides the diagnostic links on a just-in-time fashion,
relieving the clinician of the need to memorize and maintain dozens
of arcane schemas of differential diagnosis. In addition, the program
prompts the doctor and patient to ask and answer all the right
questions.

And finally, there are a number of development teams currently
working to create a standard interface for a client-server system 
that will link the large central computers of large health care 
organizations with the desktop computers in their members homes
to accomplish tasks ranging from scheduling and billing to provider-
patient e-mail to allowing clients to read and write in their own medical
records to facilitating online support groups for specific groups of patients.

Patient-Provider E-mail
Let me say just a word about the importance of provider-patient
e-mail. This is a natural, inevitable step we will be taking in the
very near future. It's a major opportunity just waiting to happen.
In many communities, including my home community of Austin,
something close to 50 percent of the population are already ready, 
willing, and able to exchange e-mail their clinicians. But it appears 
that somewhere around 90 to 95 percent of practicing physicians are 
terrified at the thought of receiving e-mail from their patients.
This is an important area that needs the benefits of our best thinking.
The small group of clinicians who routinely use provider-patient e-mail
say that it has revolutionized their practice in very positive ways.
In many cases, they can avoid the need for a clinic visit by an
online exchange. And there is always a full record of the online
conversation so it can automatically become a part of the patient's
medical record.

My best advice about supporting the use of provider-patient e-mail
in your institution would be to identify the few clinicians who may 
already be using it-or interested in using it. Give them lots of
encouragement and support. Make it known that you are encouraging all
patient-contact professionals to encourage their patients to contact
them electronically when appropriate and to explore ways that e-mail
can be used to make their practice more effective. Encourage your
employees to come up with their own internally-developed guidelines
and protocols that will allow e-mail to serve as a time saver and
convenience factor to both your clinicians and your clients. And make
it clear to all providers that the astute use of patient-provider
e-mail will be an important part of the future of health care in your
institution. 

Landing 747's in Grand Central Station
In closing, I'd like to suggest that the shift from Industrial Age Medicine
to Information Age Health Care will involve something more than just
taking our current patient education pamphlets and putting them up on
the Internet. Thinking that we could simply substitute one medium for
another without deep structural changes is like thinking that the
shift from the Railroad Age to the Airplane Age would simply mean
landing all those 747's in Grand Central Station.  We will have arrived
at true Information Age Health Care when we all take it for granted that 
the primary practitioner in our health care system is the informed, empowered 
online layperson-and that the main role for all us health professionals will 
be as coaches, teachers, supporters, and cheerleaders for system wide, 
computer-supported high-quality, low-cost self-managed care.  

Thank you very much.

_______________________________________________________________________________________________

On a Personal Note:
Please feel free to contact me by e-mail:  DrTomHI@aol.com
I'll be happy to send you an e-mail listing of upcoming meetings on
Consumer Health Informatics.

Please visit my Web site at www.healthy.net/selfcare

For info on speaking or consulting, please call (512) 472-1333
Fax: (512) 472-1345
Mailing Address: Tom Ferguson, M.D., Self-Care Productions, 3805
Stevenson Avenue, Austin TX 78703 *Recommended Reading: Health
Online:  How to Find Health Information, Support Groups, and
Self-Help Communities in Cyberspace Tom Ferguson, M.D.Addison-Wesley
Publishers, 1996, ISBN: 0-201-40989-5, $17.00 [At your bookstore or
from the SelfCare Catalog (800) 345-3371 Review copies of *Health
Online* are available to qualified reviewers. Send review copy
requests to Amanda Miles  or call Amanda  at
Addison-Wesley in New York at (212) 463-8446] About the Author
Self-care pioneer, health futurist, and award-winning author Tom
Ferguson is a senior associate at the Center for Clinical Computing in Boston,
Massachusetts and president of Self-Care Productions, an Austin-based
health care consulting firm.  Tom received his M.D. from the Yale University School of
Medicine. He founded the influential journal Medical Self-Care and served as
editor and chief from 1975 until 1989. He has served for many years as
medical editor of The Whole Earth Catalog.  He recently wrote a chapter on the 
empowered medical consumer for the book that accompanied the Bill Moyers series
on Mind/Body Medicine. He has recently been involved in organizing the USA's first
series of conferences on Consumer Health Informatics-consumer-operated computer 
applications and consumer-oriented online information resources in health care.
Tom has received the National Educational Press Association's Distinguished Achievement
Award and the Committee for an Extended Lifetime's Lifetime Extension Award for his
writings "on the rapidly expanding area of self-help and self-care." In his book 
Megatrends, author John Naisbitt cited Tom's work as representing "the essence of
the shift from institutional help to self-help." Tom's book on psychiatric drugs was
recently chosen as an "Outstanding Reference Source" by the American Library Association.
His newest book, Health Online: How to go Online to Find Health Information, Support Forums,
and Self-Help Communities in Cyberspace, was recently published by Addison-Wesley Publishing.
Tom is a popular speaker and workshop leader and has appeared on NPR's All Things Considered, 
60 Minutes, The Today Show, Cable News Network and hundreds of other national and local talk
shows and has been interviewed in The New York Times, The Wall Street Journal, USA
Today, Newsweek, and many other publications. His hobbies include watching squirrels, 
collecting old poker chips, and writing medical mystery novels. He lives in Austin with his 
wife, their two unpredictable cats, and a squirrel named Einstein. Books by Tom Ferguson: 
*Medical Self-Care: Access to Health Tools (Summit Books, 1980) 
*The People's Book of Medical Tests (with David Sobel, Summit Books, 1985) 
*The Smoker's Book of Health (G.P. Putnam's Sons, 1987)
*The No-Nag, No-Guilt, Do-It-Your-Own-Way Guide to Quitting Smoking (Ballantine Books, 1988) 
*Imaginary Crimes:  Why We Punish Ourselves and How to Stop  (with Lewis Engel, Houghton 
Mifflin, 1990)
*Helping Smokers Get Ready to Quit (Self-Care Productions/Great Performance, 1990)
*Hidden Guilt: How to Stop Punishing Yourself and Enjoy the Happiness You Deserve (with Lewis
Engel, Pocket Books, 1991) 
*What You Need to Know About Psychiatric Drugs (with Stuart Yudofsky and Robert Hales, Grove
Weidenfeld 1991, Ballantine Books, 1992) 
*The Stethoscope Book  & Kit  (Ages 7-12, with Linda Allison, Addison-Wesley Publishing, 1991)
*No Deadly Drug  (A Medical Mystery, with Joe Graedon, Pocket Books, 1992, Pocket Paper back 
1993) 
*The Aspirin Handbook (with Joe Graedon, Bantam, 1993) 
*The Get-Well-Quick Kit (Ages 7-12, with Linda Allison, Addison-Wesley Publishing, 1993)
*Health Online: How to Find Health Information, Support Forums, and Self-Help Communities in 
Cyberspace (Addison-Wesley Publishing, 1996)

_______________________________________________________________________________________________



The Limits of "Shovelware"
I'm sorry to say that in general, veteran online self-helpers have a
rather low opinion of many of the typical kinds of patient handouts we're
all accustomed to thinking as the principal medium of patient
education. They will often dismissively refer to such materials as
"shovelware"-printed material which has been put up on the Web. While
they will grudgingly agree that some of the best of these materials
can be of some use to a relatively unsophisticated consumer, or to
anyone in the early stages of coming to terms with a new
diagnosis--they will often say that much of what passes for patient
education materials ranges from the unintentionally inept to
downright patronizing.

These activist consumers are not comfortable being treated like a
stereotyped patient with condition X. They want to be seen as a
unique individual with their own special set of concerns and their
own unique history, who has also been diagnosed with condition X.
They want, in short, to be treated as individuals, not as the
traditional passive patient. They like the forums and discussion groups and
mailing lists because these resources give them an opportunity to
post their own questions-and to receive individualized responses.
Posing the problem in this way makes them feel respected and valued,
not depersonalized and stereotyped. And they are often uncomfortable
with some of the basic medical language which we professionals take
for granted-words like "patient" and "compliance" and "victim" and
"doctor's orders." The professionally-centered world view these words
imply rub many online self-helpers the wrong way
Our medical training has trained us to think in terms of diseases
and syndromes and pathology to the point where we all-too-often overlook
the unique people who have those conditions. But experienced online
self-helpers refuse to be stereotyped in the ways that are routinely
observed in the clinic and hospital. They want to Sylvia Howard or
Tim Washington, or Tina Alvarez; real three-dimensional people, not
"the liver in room 402" or "the prostate cancer patient in Examining
Room Six."

From Shovelware to "Information in the Context of Community"
Because answers to other self-helpers questions can be so useful,
many of the online support networks have developed their own lists of
Frequently Asked Questions (FAQ). In many cases, these are exquisite
short textbooks on self-care for that particular health concern.
"Shovelware," is a term often used online to apply to a pamphlet or
patient education handout, originally created for another medium, which is
subsequently put up online. Online self-helpers generally consider
such resources less valuable than more personalized and interactive
resources. When asked why they don't like such resources,
self-helpers typically reply that they provide one-way, top-down
information that makes them a passive recipient of
professionally-directed care. They frequently do not address the
client's real concerns. More importantly, shovelware presumes that
the professional knows what the client wants and needs without
asking. Shovelware does not allow the active self-helpers the measure
of control they would prefer. They are unable to take part in a
dialogue. They cannot network with others. And they are unable to
vent their frustrations.  Their strong preference is for two-way 
communication, a large portion of it peer-to-peer-which is integrated
with access to the best professional information available.  What online 
self-helpers really want is something I have come to call *information in
the context of community.*  Ideally, this is a community of concerned 
self-helpers, family members and experienced clinicians.  Self-helpers 
would also very much like to be able to exchange e-mail with
their clinicians. But as we shall see, at present very few clinicians
are ready, willing, and able to take part in such interactions.

Online Communities-Support Groups in Slow Motion
For those with little experience communicating online, the idea that
you might be able to connect with others in any intimate or meaningful
way by exchanging typed messages on a computer bulletin board may
sound extremely far-fetched. Let me assure you that online self-help
forums can be genuine, meaningful communities. Think of them as
support groups in slow motion.  These forums can give rise to real 
communities because the participants in support forums are much more 
than random assortments of online strangers.  By their very presence, 
they've already demonstrated their special concern for the focus topic, 
be it AIDS, depression, or a desire to lose weight. Knowing that others 
in your online community are walking the same path, understanding that 
they've come to give and receive support, seeing the remarkable candor 
and empathy of their online interactions, most online self-helpers soon feel
comfortable sharing even the most intimate and difficult feelings.
Online self-helpers often say they can share feelings on their
favorite self-help forums they could never discuss at home, even with
their closest friends and family members.

In the course of researching this book, I put out online requests
for personal stories that showed how online links could be a valuable
resource for anyone going through a health-related crisis. Here's one
of the many responses I received: 
Subj:   Cyberspace Love and Other Strangers From:  Linda A. Kerwin
I live in Atlanta, but I'm currently here in Cincinnati, caring for
my mother, who has inoperable cancer. I arrived here several months ago
and have yet to go home.  The day I arrived, the cancer ruptured through 
my mother's intestines and out the abdominal wall. A few days later, it 
ruptured again. The doctors gave her less than a week to live. But here 
it is months later and, happily, she's still hanging in there. I've been her
primary caregiver 24 hours a day.  I arrived with four days worth of clothes. 
After the first month, a friend brought me my car, my dog, and my computer. 
Luckily, I'd just joined CompuServe a few weeks before.  Once I had my computer, 
I began doing my own online research.  I first posted on MedSig (Medical Special 
Interest Group), then on the Cancer Forum.  During the early and most confusing 
days, I received the most helpful responses from physicians, most of them oncologists, 
on MedSig.  Responses from the Cancer Forum didn't start to kick in till later.
(I'd recommend posting frantic 'Help!' type messages on both Forums for the 
quickest and most helpful responses.) I've also been participating a lot on the
Cancer Support and Gyn.Onc. sections and also the Hospice section.  I can't tell 
you what it meant to have help, advice, support and encouragement available literally 
overnight. These people are wonderful to give so freely of their time and knowledge. 
And much of the advice I've received online is more complete and more useful than
what I get face-to-face from our attending physician. More than once, the kindness of 
strangers has brought tears to my eyes.  I use e-mail to stay in touch with my friends 
back home too--I keep everyone up to date by preparing one main letter and customizing
copies for everyone. I've more than once referred to the network as my "lifeline." When
people say they don't know how I keep going, I tell them I actually have plenty of 
friends and a lot of support.  I'm referring to my friends on CompuServe. I know I can 
log on whenever I need to, so I don't feel so alone.

As Linda's story shows, when people go online to find health information,
what they end up getting is not just the kind of information you
might find in a reference book. They connect with people, not just
data. And so they receive-and give-something much more personalized
and interactive.  Don't get me wrong. In some cases the old traditional kind of
'canned' information is just what the doctor ordered. You may want to look up
the side effects of a new drug or read a description of a particular
diagnostic test. And you can certainly do so.  But when they do choose to access 
this kind of data, online self-helpers who are a part of a support community will 
probably want to discuss what they've found with fellow members of their favorite
self-help forum, bulletin board, or discussion group. Because these networks can
provide much more than just the traditional patient education
information:
*A chance to meet experienced self-helpers who share your interests,
*A chance to benefit from the experiences of others who have dealt
with the same or similar problems.
*A chance to discuss your problem with a variety of knowledgeable
health professionals.
*The opportunity to receive support and understanding from a caring,
supportive community.
*And, possibly, the beginnings of new online friendships.
Most online self-help thus involves two-way, not just one-way,
communication. That's why going online may feel more like moving into
a new community than like visiting your local library. The process
you'll go through is much like venturing out into a new neighborhood,
walking around the streets of your new locale, meeting people,
getting to know the neighbors. Before long you find you're getting
into conversations, being invited into people's houses, and attending
neighborhood social events. And before you know it, you'll start to
feel that you're a vital member of the community. Online Surprises
As I was doing my research on online self-help, I began keeping a
file of things I found that really surprised me. I ended up with many
entries. Here are just a few: 

The Ratio of People-to-People Conversations to Data-Seeking
Among the heavy users of online self-help, the ratio of
people-to-people interactions compared to the people-to-data interactions
is in the order of about 9 to 1. That is to say, regular users spend nine times
as much time interacting with other people as they do accessing data.

"Bad Quality Information on the Net"
There are a lot of different groups out there and almost as many different
standards as to what they consider "good quality information." It is
the feeling of most active self-helpers that it is no longer up to
the professionals to decide what standards a particular user should
subscribe to.  This is each user's decision.  For awhile I was monitoring a 
holistic health group on the Prodigy network in which it seemed like the guidelines
were that you said only good things about alternative approaches and only bad things
about anything conventional.  On the other hand, there are many online groups where 
the standard is that you say only good things about conventional approaches and only bad
things about anything alternative.  As active, intelligent consumers, most online users 
feel that they can pick where they want to go and they can tell pretty quickly what the
assumptions are in that particular group about the quality information available there 
and the way that suspect information will be challenged.  On most groups, there is a powerful
self-correcting quality to the network.  Users will often joke  that the best way to get 
good information is to post bad information and wait for the corrections to come in.

Informal Credentialing of Online Sites
What is developing is a sort of "Good Housekeeping's Seal of Approval"
arrangement on the Net.  There are many individuals & organizations
that monitor other sites, and give "awards" to the best ones in their
area of concern. Clicking on the award takes you directly to the Web
page of the credentialing organization. The role of this kind of
decentralized, informal credentialing is becoming increasingly important. 

Benefits of Online Systems-The Evidence 
There is  little hard data about the economic, physical, and  psychological
benefits of online self-help resources. The people who have done the
CHESS program at University of Wisconsin--a home health workstation--probably
have the best data, but they are just looking at one online resource. Then there 
is a very interesting but rather unscientific survey done on the Better Health and
Medical Forum on America Online. It's based on a non randomized group of users who
volunteered to answer the questions. But even so, the answers are quite interesting.
Of users who responded, 5.9% said they had avoided one or more emergency rooms
visits because of information they got on this forum.  26.1% said that they had
avoided one or more unnecessary medical doctor visits.  55% reported increased
negotiation skills that made them a smarter medical consumer. And 64.9% indicated an
increased ability to cope with a troublesome medical problem. 

The Best Self-Helpers are Often Ill
Another surprise was that the best self-helpers are the ones who are seriously ill.  
I found that some of the people running the best discussion groups and forums were
literally communicating from their death beds. When you ask them why they are spending 
their last weeks and months helping others, they say: "I would never have chosen to go
through this illness. But given that I am going through it, I'd rather go through it 
communicating with 100 others via my laptop than shut away in a darkened room at the end 
of the hospital corridor with no one around. And it's nice to know that I turn this 
misfortune to good advantage by making myself useful to so many other people."

Cross-Platform Links
There are an incredible number of cross-platform links, i.e., if someone
is active in the breast cancer newsgroups, you'll probably also find
them on the breast cancer mailing lists, on the breast cancer forums
on the commercial services, and on the breast cancer Web pages as
well. 

Size of Resources for a Given Topic is Not Predictable
The size of the online resources you'll find for a given condition
is not easily predictable-based on our usual clinical experience. Breast
cancer and other kinds of cancer have a big online community.  So do
AIDS, attention deficit disorder, and chronic fatigue syndrome.  But
there is a surprisingly small amount of online discussion on heart
disease or stroke, and very little on blood pressure or
arthritis-despite the fact that these problems are among those most
commonly seen in the clinic. 

1/3-1/3-1/3
As a rough rule of thumb, online self-help communities can be
roughly divided into the following three groups:
*physical health concerns
*mental health concerns
*recovery and general problems of living

From Passive Patients to Health Active, Health Responsible Consumers
The people you find online are not behaving like the typical health
consumer you might find in a clinic waiting room. In some earlier writings
I've written about three types of health consumers:
*Passive Patients,
*Concerned Consumers
*Health Active, Health Responsible Online Consumers

Passive Patients-On one end of the continuum we have the passive
patients who want the doctor to act as a parent, telling them
exactly what to do.  Their family doesn't take an active role, they
have little need for information, and they aren't able to or don't
want to talk about feelings. 

Concerned Consumers-These are the "A students" of medical practice. They are
attentive and respectful, and do everything their health professional tells 
them, but they don't go beyond this. They don't really take the initiative of 
taking active charge of their own health. 

Health Active, Health Responsible Online Consumers-Most online self-helpers 
would definitely fit into the health active/health responsible category. 
They want their doctor to be a colleague, not an authority, a consultant, 
not a parental figure.  They want an active interaction with a variety of
knowledgeable people: self-helpers, alternative practitioners, friends
and family-not just their doctors. So they talk to many people, take
courses, read books, develop their own unique perspective, and
frequently end up dealing with the health concern  it their own very
individualized way. They are the ones seeking information in the
context of community. And that's exactly what the doctors and other
health professionals associated with these online special-interest
groups are providing.

Net-Savvy Clinicians-It is worth noting that the health professionals
who are comfortable working with online self-helpers involved in
these online networks are those who are comfortable being
facilitators, not authorities. In their online interactions, they
serve as a colleague, not as a parent. Instead of being the person's
only contact, they are willing to be one of many sources of
information.  They are willing to listen to each participants
concerns and to give support and empathy, not just one-way, top-down
information.  They encourage talking about feelings and offer
consulting support, negotiation and caring. A New Map for Healthcare
In some earlier articles I've written about the map that we have
traditionally used to use to describe our health care system--

A pyramid, with its tip at top and its wide base below.
The pyramid is divided into three horizontal layers:
*Tertiary care on the top,
*Secondary care in the center, and
*Primary care on the bottom

We were told in our training that this is what health care was all
about.  It was divided into three parts: primary, secondary and tertiary. 
But in fact, this is just a map of professional health care. Lay care is
left off the map. Yet most health care interactions lie completely
outside the professional health care system.  Here's a revised map that 
includes both professional care and lay care:

This pyramid is now divided into six horizontal layers.
Running from top to bottom, they are:
*Tertiary professional care
*Secondary professional care
*Primary professional care
*Tertiary lay care (Self-help networks)
*Secondary lay care (Friends and family)
*Primary lay care (Individual self-care)

What I discovered in doing my doctorate thesis on self-help and self-care at 
Yale Medical School back in the mid-1970's was that just as there are
three layers of professional care, there are also three layers of
self-help and self-care: Individual Self-Care-When people have a
problem, the first thing they generally do is to try to solve it
themselves on the basis of what they already know or with the help of
readily available materials. Friends and Family-If that doesn't work,
they move to the next level, reaching out to Friends and Family. They
will ask the most immediate members of their social support system
for help, support, and advice. Community Self-Help Networks-If that
doesn't work, they will reach farther out in their social support
networks-to more distant relatives, neighbors, friends-of-friends,
self-help group, community hotlines, and other self-help resources in
the community. For there are in every community, informal networks of
natural helpers, who provide a good deal of help and support to
others.

It is only when these three fundamental levels of health care are
not sufficient-or are not available-that a person needs to make use of
professional care.  It is useful to think of the top three layers on the previous slide,
the three levels of professional care, as the "visible" part of our
health care system. That's what most of us think of when we think of
health care. But while such care is doubtless important, this is not
by any means the 'whole banana' of health care.

The three levels of lay care represent our most fundamental-and most
frequently overlooked-health care resource-the world of personal and
family health care, and community medicine. As we move into the
Information Age these, this formerly  "hidden" parts of our health
care system will become more and more important. Because each of
these levels of lay care is receiving dramatic new kinds of support
from the emerging field of consumer health informatics. The "Berlin
Wall" 

Separating Professional and Lay Health Care
If we look at health care in this way, we can see that there has
traditionally been a major barrier, a kind of "Berlin Wall," between
professional care and lay care. And so we have this major schism at
the very foundation of our health care system. and the lay part of
our health care system. 

The same six-level pyramid as in the previous slide. But this time
there are doted lines connecting each of the six levels with each of
the other levels: 
*Tertiary professional care 
*Secondary professional care
*Primary professional care
*Tertiary lay care (Self-help networks) 
*Secondary lay care (Friends and family) 
*Primary lay care (Individual self-care) 

One of the things our burgeoning computer networks are doing is
connecting each of these levels of care to every other level. Computer networks
are beginning to bridge the gap that has separated lay and
professional care. Ultimately, online health networks will reconnect
lay medicine with professional health care. The "Berlin Wall" will be
come a  "permeable membrane."  And ultimately, as we fully embrace the 
paradigm shift I am suggesting, we will turn the entire pyramid of health 
care upside down, so that lay care is at the top and professional care is at
the bottom.  The pyramid has now been flipped upside down, with the broad base
at the top and the narrow point at the bottom. It is divided horizontally into 
'Six Layers of Information Age Health Care' running from top to bottom as follows:
1. Individual self-care.
2. Friends and family
3. Self-help/community networks
4. Health Professionals as Facilitators
5. Health Professionals as Partners
6. Health Professionals as Authorities

This Information Age model is based on an approach encourages people
to take responsibility for their own health problems, using the six levels of
Information Age health care in the order listed on this slide.
At Level One you would try to solve your own problems yourself, using what
you already know and the resources you have close at hand-including
information and guidance system available via your home computer.
At Level Two, you would tap into the knowledge and wisdom of your
immediate family and close friends-including reaching out to friends and family
via computer network.  At Level Three you would explore and make the best possible use of
self-help networks and other community resources-including good online
resources.  At Level Four you would make online contact with a health
professional who would act as a coach or facilitator, not as an authoritarian,
"take-charge" authority.  At Level Five, you would work as a partner with a health
professional whom you would have the option of contacting either online or
face-to-face, as the situation indicated. When this type of care was
needed, both partners would discuss the problem, express their views
and preferences, and would then negotiate a solution satisfactory to
both.  And it would only be in those rare cases where all of the five
previous levels failed and you were unconscious, disabled, or incompetent,
that you would need to make use of the all-too-familiar Level Six,
"The Health Professional as Authority," in which the health
professional would issue "doctor's orders" and you would passively
and uncritically obey.  The main problem with Industrial Age health care
and the principal cause of our contemporary health care crisis, is our deeply
ingrained tendency to use Level Six, "The Health Professional as Authority" as 
the hammer to pound all the nails of health care.