Inkwell: Authors and Artists

    
Healthcare as an industry and a practice has been approaching crisis
related in no small part to escalating costs and increasing load - more
and more people needing care, especially with healthcare reform
increasing the number of people with some form of health insurance. 
Healthcare is also overdue to feel the full impact of digital
convergence - there's pressure to move from written/analog to
electronic/digital health records, and there's the potential to develop
revolutionary personal healthcare and wellness systems. Add to this
the fact that patients are empowered by access to information via
Internet technology, and a new participatory system of healthcare is
evolving. 

Participatory Medicine is defined as "a model of medical care in which
the active role of the patient is emphasized. The term participatory
medicine has been used at least as early as 2000 to mean one or more of
four interrelated ideas:

•    A group of people who suffer from a chronic disease form a
community (often an online community, a support group) to share
information and mutually support each other.
•    Members of a patient community (or members of a community
disproportionately affected by a disease) play important roles in
community health decision-making.
•    Patients play a role as part of collaborative "treatment teams"
addressing their diseases.
•    A patient is "mindfully" involved in treatment, by making
behavioral changes, meditating, or similar acts.

Joining us to discuss the future of healthcare and participatory
medicine are Healthcare Futurist Joe Flower and members of the Society
for Participatory Medicine: Alan and Cheryl Greene, "ePatient Dave"
deBronkart, Danny Sands, Dan Hoch, and Jon Lebkowsky, who will
facilitate the discussion.

With nearly 30 years’ experience, Joe Flower has emerged as a premier
observer and thought leader on the deep forces changing healthcare in
the United States and around the world. As a healthcare speaker,
writer, and consultant, he has explored the future of healthcare with
clients ranging from the World Health Organization, the Global Business
Network, and the U.K. National Health Service, to the majority of
state hospital associations in the U.S. as well as many of the
provincial associations and ministries in Canada, and an extraordinary
variety of other players across healthcare - professional associations,
pharmaceutical companies, device manufacturers, health plans,
physician groups, and numerous hospitals. He has been a consultant on
change and the future with the U.S. Department of Defense, Airbus and
ArianeSpace, and a number of governments in China. The rest of his bio
is here: http://www.imaginewhatif.com/bio.html

Alan Greene is a Clinical Professor at Stanford University’s Lucile
Packard Hospital, Chief of Future Health at A.D.A.M. Inc., co-founder
of DrGreene.com, and author of several books, including Raising Baby
Green. Dr. Greene has been recognized by Intel’s Internet Health
Initiative as one of four pioneering Online Health Heroes “who are
developing innovative and compelling new ways to use the Internet to
advance public health.”

Cheryl Greene is co-founder and the executive producer of
DrGreene.com. The AMA has called DrGreene.com “the pioneer physician
web site on the Internet.” Together Alan and Cheryl have been providing
health information and community for parents around the world since
1995.

When e-Patient Dave deBronkart was diagnosed in 2007  with advanced
kidney cancer, he read that his median survival 24 weeks. A longtime
online community member, he rapidly learned to use every aspect of
empowerment, technology, and participatory medicine to beat the odds. A
high-tech marketer for TimeTrade Appointment Systems, he’s now an
outspoken blogger and co-chair of the Society for Participatory
Medicine. He recently wrote a proposal advocating for strong patient
representation in Washington, titled "The Invisible Stakeholder: Why
America Needs a Patient-In-Chief."

Danny Sands is an internationally recognized lecturer, consultant, and
thought leader in the area of clinical computing and patient and
clinician empowerment through the use of computer technology. In
addition to working at Cisco, Dr. Sands is an Assistant Clinical
Professor of Medicine at Harvard Medical School and he maintains a
primary care practice in which he makes extensive use of health
information technology.

Dan Hoch is a neurologist based at the Massachusetts General Hospital
and is an Assistant Professor at Harvard Medical School. An early
developer of online resources for patients, Dan helped found Braintalk
and is active in the American Academy of Neurology, the American
Epilepsy Society, and the American Medical Informatics Association.

Jon Lebkowsky is a business strategist and thought leader focused on
social uses of web technologies. An early online community moderator on
The Well, and pioneer blogger, Jon has participated in and written
about digital cultu re, media, and sustainability. He now consults on
the social web, online communities, web development, wireless
broadband, and e-democracy.

Thank you all for being here.
  

    
Welcome, everyone. This should be a great and very timely
conversation.

I think that our conversation will focus primarily on the U.S., where
a healthcare reform bill is in (contentious and controversial) progress
of passage. Wikipedia has results of a 2007 Commonwealth study here:
http://en.wikipedia.org/wiki/Health_care_compared#Cross-country_comparisons
 The study concludes that "although the U.S. system is the most
expensive, it consistently underperforms compared to the other
countries." It also notes that the U.S. is the only country without
universal healthcare.

What are your perspectives on the state of healthcare in the U.S., and
on healthcare reform? Will the legislation that passed the house be
helpful? Are we moving in a direction that will improve the situation
(underperformance) noted above?
  

    
Our current complex, labyrinthine, barnacle-encrusted healthcare
system has prominent strengths and weaknesses.

On the positive side, we tend to foster cutting edge research and
breakthrough advances in both diagnosis and treatment of existing
disease. We create at least the perception of freedom of choice,
state-of-the-art care, and short wait times for patients. Some of our
hospitals, clinics, research labs, doctors' offices. and those who work
in them are among the very best in the world. We take care of some of
us very well indeed.

But the system has grown in a way to make it no longer tenable.
Working people without job-related benefits and with pre-existing
conditions are trapped on the outside. Inefficiencies, redundancies,
and bureaucracies strangle the flow of information and care. The
experience of healthcare has become exhausting and demoralizing to many
providers, employers, and patients (see If Air Travel Worked Like
Healthcare http://bit.ly/5hOOpg).

Some of these problems can and must be solved with healthcare reform
legislation. I believe that the current legislative effort is an
important step in the right direction.

Nevertheless, the more fundamental changes needed to remake a nimble,
effective system for the 21st century will require deeper change to a
culture of health before disease, prevention before treatment,
participation before passivity, and unfettered access to one's own
health data.
  

    
I agree with Alan's response, but wish to add to it.  I believe the
major US health care system challenges are:

1. The massive uninsured population (on the order of 40 million), some
of which is because of the difficulty in procuring health insurance
unless one is employed by a company that subsidizes it (a historical
artifact that has outgrown its usefulness);

2. The nonalignment of incentives, so that neither patient nor
physician has any financial skin in the game and that financially
encourages providers to provide quantity of care rather than quality of
care--the more I see you or the more things I do to you, the more I
get paid;

3. An expensive and inefficient malpractice liability system that does
not motivate the types of behavior we'd like to see;

4. A pervasive attitude among patients that healthcare is a spectator
rather than a participatory sport, which is facilitated by an opaque
healthcare system that erects barriers to patient engagement.

The current healthcare reform bills address the uninsured but do
little to address the others.  The Senate bill does have language
permitting demonstration projects to begin to address the dysfunctional
reimbursement system, but until this becomes the standard for
reimbursement we will continue to struggle with healthcare costs that
outrun inflation.

Addressing liability reform will be politically challenging, due to
the surfeit of lawyers in Congress, but it must happen.

Greater patient engagement can be promoted through the adoption of
technologies that lower barriers to patient engagement, such as online
communication with providers, online convenience transaction (like
making appointment and requesting prescriptions), and online access to
medical records.  The proposed "meaningful use" rule does mandate
electronic access to records for patients, which will move us towards
greater engagement.  However, we must work with both patients,
caregivers, healthcare providers, and employers to change the culture
of health passivity that is pervasive among many people.
  

    
Danny, to your point about greater patient engagement, we've heard the
argument that this is a negative - that engaged patients waste
physicians' time, that patients with more access to information are
liable to misinterpret what they're hearing, that individuals lacking
adequate preparation and context will attempt to self-treat, or provide
treatment to others. How do you respond to these points?
  

    

I agree with all the reasons for change that you've outlined. 

But the sad fact is that with all the Republicans totally against health
care reform for political reasons and the loss of the filibuster proof
margin in the Senate, the chance for health care reform of any kind,
however minor, does not look good right now.

So I'm wondering what thoughts you all have about how bad things will
really have to get before people will vote a large enough supermajority
into office to make things happen.
  

    
Jon, I have heard many of those concerns about "engaged patients." I 
think they are expressions of fear. The problem is not too much 
information, it's too little. A little information is another factor in 
what my colleague Ian Morrison calls "Pimp My Ride Healthcare" - the 
consumerist feeling that more is better, whatever the latest technique, 
test, or procedure, I've gotta have it. If we had as much information 
about healthcare as we routinely get about cars, or buying houses, we 
would be much better able to collaborate with our doctors in our care.
  

    
Joe, and anybody who has insights, my experience with trying to be an
engaged patient was incredibly stressful.  I wouldn't have it any other
way, but reading research abstracts to try to understand my choices
took me to the edge of my ability to learn at the same time that I was
emotionally in a state that made me feel like my brain was pudding.
This was despite my having some undergraduate education in the sciences
years ago, though I was more interested in seismology than biology
then.  I want the right to educate myself and collaborate fully, and I
am the kind of person who researches major decisions, but I am
sympathetic to those who do not. Knowing how and what to learn is hard
enough.
Having the time to research and read, and the background to be able to
make sense of tough choices is something not many patients will bring
to the collaboration table. I hadn't thought about languages or basic
literacy, but for many people those are the big barriers.

What kinds of provisions can be made for patient education at the
level at which that patient wants to learn?
  

    
Jon, Francis Bacon said "Knowledge is power," and I think that applies
to healthcare, as well.  Yes, this knowledge can be hard to acquire
(to Gail's point), can be scary to patients (as Jon said), and can feel
threatening to physicians, but in the end, as Gail points out, it's
worth it.

To manage this shift in paradigm, we need to do several things. 
First, we must understand that people have varied willingness and
capacity for understanding health information.  This varies with
culture, attitude, general and health literacy, stage of illness, and
health status, and is not necessarily stable over time.  Therefore we
must provide health education that is appropriate for these various
states.

Next, we must convince health professionals that there is value in
engaging patients and providing information to them.  Better data to
document the benefits of this approach would be helpful here.  We must
also teach patient engagement strategies to health professionals.

Joe is correct when he notes that many patients thin more consumption
of health services is always better.  But I think that if we spend as
much time prescribing information as we do prescribing tests and drugs
that we would all be better off.
Finally, there is a need for patient educators, who can assist
patients as they navigate information about their health.  Medical
librarians, health professionals, and others could provide these
services.  Although there are some of these professionals working today
to help patients, there is likely a mismatch between supply and demand
for these services.  Today, a challenge is that the cost must usually
must be borne by patients and their families, but I'd like to see every
healthcare system and every health plan provide these services.
 
  

    
Where do we start with education? Do we need to consider overhauling
how health education is structured and provided at elementary and
secondary levels? Is anybody looking at that with the concept of the
empowered patient in mind?
  

    
In my international work on medical device standards, I had some
contact with public health officials.  When asked what the biggest
health problem was, they would reply "bad personal choices". When
challenged that surely there are more important problems in the poor
countries, the response was that even with severely limited choices,
consciously bad choices were made among the few available.
 
This experience made me wonder if education has an uphill battle
against our tendency to ignore health in our personal choices.  

If we have limited control, perhaps "training" would be more effective
than education, which implies leaving the matter up to individual
will, however well educated?
  

    
One important part of the Participatory landscape that can be
over-looked is the importance of engaging key members of the
e-patient's network as researchers, sounding boards, advocates, and
caregivers. As a patient-turned-epatient during a year long batter with
inflammatory breast cancer I can tell you -- it takes an (e?) village!

Some of the most important help I got from my community was:
-- wading through massive amounts of technical information and
filtering it down to what I needed for the next step of treatment
-- child care
-- meal preparation
-- encouragement to stand my ground when I might have given in
-- cheering squad

Organizations like ACOR can provide mental and emotional support
helping to relieve the stress from family and friends. They all play an
important role.
  

    
There are some real disadvantages for patients in this consumer driven
model they are using now. 

 experience of it is that it is more of a "didn't ask, don't tell."  
IOW if you don't know to ask what that thngamajig on your elbow is, it
is not certain your provider is not likely to suggest checking it out.

The fact is no one can be expected to have or have background to
understand in full depth the nature of every possible medical problem,
its context and best treatment. 

Actually the insurance profit comes from just this approach. You won't
get the test or treatment in that benefit period if you don't know to
ask. And now of course they are into limiting coverage of routine
screening testing. 

I am all for patient autonomy and averse to the feminist's fears of
patriarchy but my lord we pay these folks because they are supposed to
be experts it seems to me there should be some exchange of information.
  

    
Sorry for the typos. I am used to being able to edit after posting.
  

    
"The fact is no one can be expected to have or have background to
understand in full depth the nature of every possible medical problem,
its context and best treatment."

This is a great point - what we find within patient communities is
that many patients become the most knowledgeable of their particular
conditions because they have skin in the game in the most literal
sense, and in online communities they share knowledge and become even
smarter. Smart physicians open to this new world of knowledge on the
ground, rather than resisting it or feeling hassled or threatened when
a patient actually seems to know a great deal about what's happening
with their bodies.
  

    
I have been dealing with a health situation for the past three years.
I am on a mailing list for people with this situation and their
caregivers. The problem I have found is that most people only post when
they are having problems, so my knowledge gets kind of skewed. I read
lots of posts from people who had trouble after surgery so I was all
ready to be in a lot of pain, need a lot of help, etc. Instead I
breezed through it, never took a pain pill stronger than tylenol, and
have found my experiences to be pretty different. 
  

    <scribbled by jonl Mon 25 Jan 10 18:04>
  

    
re:#14 "The fact is no one can be expected to have or have background
to understand in full depth the nature of every possible medical
problem, its context and best treatment." 

It's this very fact that makes physicians meaningful. If we as
patients could have all the information we needed without them, we
should just self treat. An individual doctor may not know as much about
your unique set of illnesses, but an individual can not possibly know
as much about the whole spectrum of health as the physician who as
devoted him or herself to a life of study.

That is why the partnership between an engaged patient and an engaged
physician is so powerful and so important.
  

    
Right now Howard Rheingold (futurist, author, and an early mainstay of 
The Well) is going through a problem with squamous cell cancer of the 
rectum, considered treatable, but with the usual purgatory of radiation 
therapy and chemo. One of the first things he did after diagnosis was to 
gather his community resources by announcing it on his Facebook 
page, and starting both a blog and a Twitter stream for his butt. 

The most important connections remain personal. We learn the most from 
the most trusted sources. In a situation in which there is too much 
information, yet people are not able to learn enough of it, what is 
missing and most important are the filters and connectors - those key 
people in multiple overlapping communities to whom people naturally turn 
for their experience and wide knowledge. We see this in online 
communities around disease states, such as on MedHelp.com (with its 300 
conditions, 1 million registered users, and 15 years of experience). 

A truly comprehensive and effective public education on health would 
reach out to all kinds of intermediaries to whom people listen for basic 
facts on health, from chiropractors and other complimentary medicine 
practitioners, to ministers and key lay people in churches, to barbers, 
to editors of women's magazines, to Oprah. The right information must get 
to the trusted people.
  

    
I did a similar thing to Howard when I first was diagnosed with a
tumor in my esophagus. I wrote an email to my circle asking for any
insights, ideas, etc. I found that being very open about what I was
going through was very helpful. I was informed of a lot of resources
that I wouldn't otherwise have heard about.
  

    
I was diagnosed with celiac disease almost eight years ago at a time
when there was very little physician awareness of the condition.

It is recommended that each first-degree relative get tested for
celiac disease, but I had so much resistance from my sons'
pediatricians that I had to bring in the heavy guns (full multi-center
study on the new prevalence numbers) before I could get him interested.
Remember, in school, when they touched on celiac disease, they were
told that it was highly unlikely they'd ever see it in their own
practice, that despite a much higher incidence in Europe, the incidence
in the US was thought to be 1 in 4300. Incidence was low because
suspicion of the condition was low. 

It isn't that doctors aren't getting educated on the latest and
greatest in pharmacological options and new techniques. But this
information comes from pharmaceutical reps who have something to sell.
There isn't a good system in place to remind doctors that relatively
inexpensive treatments can have huge effects on the health of the
patient. 

I'm very confused, for instance, that in cases of developing dementia,
that a TSH test is all that is used to rule out thyroid disease when
suboptimal thyroid levels are well-known to cause dementia. The other
condition that must be ruled out before Alzheimer's is stamped
irrevocably on the chart is B12 deficiency, also extremely common in
the elderly. The test they depend on to rule that out is the B12 serum
test which has a 50% rate of false negative (50% of B12 deficiencies
are missed). 

I wouldn't know any of this if my GI hadn't sent me online to
investigate my celiac diagnosis. He acknowledged that they patients
online had a much better grasp of the intricacies of detection and
treatment. The gluten free diet, being very tough to navigate, is the
only treatment for CD. But the information I found from my (ICOR
listserv) group about how interdependent the different autoimmune
diseases are led to my actively seeking (and getting) diagnoses for
thyroid disease (the most common companion to celiac disease) and
pernicious anemia. 

I also learned that it isn't enough to read the abstract of a study.
Sometimes terrible conclusions are published in even a peer-reviewed
studies from respectable journals. It is really best to read the entire
study and investigate the methods against the conclusions. In the
field of research, as in all things, follow the money, and remain
skeptical.
  

    <scribbled by jonl Wed 27 Jan 10 04:48>
  

    <scribbled by jonl Wed 27 Jan 10 04:49>
  

    
e-Patient Dave deBronkart, who will hopefully show up here at some
point, tells how his cancer was discovered here:
http://patientdave.blogspot.com/2008/06/my-cancer-story-short-version.html

When Dave was diagnosed with stage 4 kidney cancer, he researched like
crazy online, joined the patient community ACOR, and found his way to
the experimental treatment that saved him. He's since become an
evangelist for participatory medicine.

I like this paragraph:

"I continued researching, studying my radiology reports and lab
results on PatientSite, and asking questions. Often I was wrong; being
empowered didn’t make me an oncologist. Yet my phenomenal oncologist
David McDermott and team said 'I am happy to field your questions.'
Tip: Arrogant doctors are 'doctosaurs'; you don't need to put up with
that anymore."
  

    
re:#14 "The fact is no one can be expected to have or have background
to understand in full depth the nature of every possible medical
problem, its context and best treatment." 

It's this very fact that makes physicians meaningful. If we as
patients could have all the information we needed without them, we
should just self treat. An individual doctor may not know as much about
your unique set of illnesses, but an individual can not possibly know
as much about the whole spectrum of health as the physician who as
devoted him or herself to a life of study.

That is why the partnership between an engaged patient and an engaged
physician is so powerful and so important.
  

    
I have a more overtly political update from friends of mine who have
done legislative analysis on the bills in congress, and then a question
for all the panelists about that point of view.  First, I'll post the
alert...