Inkwell: Authors and Artists

    
i shared this anecdote with <bbear> when he sent out his call for healthcare
horror stories. but it might be useful to recontextualize here:

i have many many doctor relatives. the wife of one of them had a major
bicycle accident in a somewhat rural community. my relative ran to be with
his wife at the site of the accident, supervised the transfer to the Big
City where they live and the home of major medical centers, and hence to the
hospital where she stayed for several days. in no case did anyone (not the
docs, not the nurses, not the attendants, not the xray techs) ever show any
sign of reading her charts --- as in, her right arm is broken, do not inject
or jostle that arm. my relative commented that if he hadnt been there
continuously for those three days --- and been a doc besides --- he has no
idea how badly his wife's care would have been botched.

i dont think apps or tablets or or any other e-anything would have made any
of the healthcare professionals want to =bother= to demonstrate -care- and
in a sense, do their job properly. his impression was that not only were
they not reading the chart, they werent even seeing the patient as an
individual, exhibiting diligence and curiosity about someone in their care.

he did not come out of that experience feeling 'if only the staff had better
access to wi-fi! if only my wife had been a more e-engaged patient!'

the current healthcare system is so broken in so many ways, as wise folks
like <bbear> can document in far greater depth and detail than i.

but i am just not convinced that the injection of what used to be called IT
by itself can begin to solve the problem of poor/shoddy/non-existent -care-.
in an ideal world, maybe it might. but candide i am not...

i realize i am harshing the mellow of our inkwell.vue guest --- and she
should know there is no animosity directed towards her. yet i shall remain
skeptical to my dying day of ITish solutions to lack of human caring...but
then, i have never understood how the original rogerian ELIZA therapy bot
worked for many people...
  

    
I don't know that you're "harshing the mellow" so much as persistently
misunderstanding what this conversation is really about. It's not
about hospital IT or access to wifi. It's about empowered patients. Tom
Ferguson focused on how the Internet facilitated a democratization of
knowledge, so that patients could have more and better access to
information about their conditions, and could have access to others
with the same condition, and that this could be empowering. Also that
physicians should and could be willing to see patients as informed,
intelligent, enabled, and equipped to be actively engaged in the
process of treatment, rather than passive objects of care. What you
describe above is exactly the sort of thing we hope to address by
transforming the view of the patient's role in the treatment process -
and yes, it's always good to have a caregiver with you when you engage
with healthcare, especially if you're really sick - and the caregiver
should also feel empowered.

Of course, there are a lot of issues. E.g. you could have patients
clustering to share misinformation and create a condition of fear
rather than mutual empowerment. Physicians can be irritated by patients
who show up and say "I read on the Internet that..." and refuse to
listen or respect the professional healthcare context. You can have
hospitals and healthcare professionals that create worse issues than
they're supposed to fix
(http://www.safepatientproject.org/share_your_story.html). You can have
bad data, garbage in garbage out, having an adverse impact on
treatment. You can have physicians and nurses distracted by insurance
requirements and various healthcare bureaucracies. 

We're not going to change healthcare overnight or make all of those
issues go away. There are system problems and there are human problems
to address, and participatory medicine tries to address them. Nobody
argues that technology is a panacea, we just acknowledge that
effectively deployed and used by patients and by healthcare
professionals, technology can be helpful and powerful. 
  

    
Good lord.  This stuff is about new tools that allow patients more 
information and more hands-on control of their own health in a climate 
that has become cold and impersonal.    I'm never going to have a 
relationship with a GP like the one I had in the 70s, where we were 
neighbors and all knew each other personally.   So I see this as an 
opportunity to take back some control of my own health.   

It's just a new operating system to learn, no pun intended.   Learn it, 
and gain hands-on access.
  

    
jon, i do understand what the convo is about. am just pointing out that obe
can be as epowered a patient as possible and still wont make a diff (which
is why i brought up the example of my bike-accident injured woman)

however i will bow out at this point
  

    
This country currently spends 16% of the GDP on health care versus 6
to 11% in  other countries which have universal health coverage,
something we do not have.  In spite of these expenditures, studies
prove that our outcomes on many measures are not better, they are worse
than the countries where they spend less. There is definitely
something wrong with this picture.  It is projected that by 2025 health
care costs will represent 25%  of the GDP and  in 2050 it will be 37%
of the GDP.  These are scary numbers  and the American public
(patients) are ultimately footing these bills.  

e-Patients Live Longer focuses on providing guidance to patients about
taking charge of their health care by having the right information at
the point of care (or engaging an advocate who has that information
when you are too ill to do it for yourself),and by having the right
tools to manage chronic health conditions.  I  contend that when
patients come to their health providers with full
information,appropriate questions and an understanding about how to
manage their health issues,  The health care experience is better for
the patient and more efficient for the provider.  Technology in and of
itself does not make things better.  It  provides enabling tools that
hopefully will in the longer term bring down the cost of care and
improve the quality.

 
  

    
This al assumes the patient is well enough to be any of those things--
informed, engaged, etc.  And my experience, as the spouse of a
recently badly injured person is that, absent my presence, none of that
is possible -- seriously, family/friends/social workers cannot be
there all the time. 

 It was a constant problem, just getting the staff reading what was
already in front of them to be read. Time was usually the issue.  I
can't count the times I repeated the same information, each time to be
entered faithfully into a computer apparently only for historical
reasons.

These were all caring, often selfless professionals who clearly wanted
to do the right thing.  I came away with nothing but respect for them,
and very little respect for the support systems they relied on.
Including electronic records. 
  

    
Electronic records are a mixed bag.  Many are horrifically unfriendly
to their users and very few of them communicate with other EHR's.  This
means that one of the most obvious benefits of the technology which is
to always have information at the point of care becomes impossible. 

I agree with you, and in my own personal experience,the front line
health care professionals:  doctors, nurses, therapists, for the most
part, (but not always,) are caring individuals who are working where
they are because they want to help patients.  However, the support
systems (not technology but processes) that are necessary to keep
things going are often weak and faulty.  

Finally and probably most important, when an individual is very ill it
is essential that an advocate who is empowered and will speak up  is
there are much as possible to oversee care and help with managing the
patient.  Although that is often a daunting task, especially in
situation where there is little or no family, it is a fact that the
overworked, often underpaid health care workers who are assigned to the
patient can barely do an adequate job. In health care we need a much
larger cadre of volunteers who are willing to help It is impossible for
a patient who is barely able to function to be empowered and engaged.
  

    
Nancy, there's one aspect of the healthcare experience that we don't
discuss much. Most of our conversations about the e-patient assume
access to care, however an increasing number of citizens in the U.S.
lack access because they don't have insurance, or have very limited
coverage. How do we address the needs of patients who can't afford to
visit a physician? Who can't cover basic healthcare costs? 
  

    
In my chapter on Patient Centered Care I discuss community health
centers that are scattered throughout the country.  These are free
clinics established in the 1960s and allocated and state and  federal
funds help to pay for basic care to these under-served populations. 
the funds come mostly from Medicaid and from federal grants.  these
health centers provide ambulatory services and provide gynecologic
services, family practice and pediatric care.  At the bare minimum they
offer wellness check ups immunizations, basic tests and treatment.
They are often staffed by physicians and nurse practitioners who donate
their time.  

 Is this enough?  No it is never enough and we need a better system of
extending basic care to much larger populations some of whom have
minimal coverage and in these economic times avoid seeking care because
they do not have the funds to pay for the treatment after a diagnosis.
In the long term this would save the system money because it would
result in far fewer expensive ER visits that we all pay for in the end.
   
  

    
I wonder to what extent people who really need care are
self-diagnosing and looking at online resources, because they can't
afford to see a physician?
  

    
Sorry for being away so long: the trip to our winter writing retreat
in Baja was longer and more arduous due to weather than we had supposed
— and then yesterday we had a little medical emergency ourselves.
Turned out to be no big deal, but did involve us in experiencing a bit
of the Mexican healthcare system (and most of a day to run up to La Paz
and back).
  

    
A key theme of the discussion above has been: "Empowered, engaged
patients do better!" "But most of the time it doesn't matter how
empowered or engaged you or your advocates are because everybody
ignores you anyway!" So we get a picture of even the empowered, engaged
patient swimming upstream against a system that is oriented 

Let me add this thought: As in anything else, the power of the
individual (for instance, as a consumer) does not count for much. But
the power of the individuals as representative of the great economic
forces that support the business, the institution, the paychecks of the
people working in it, counts for everything. In the
insurance-supported fee-for-service system, nobody's paycheck really
depends on figuring out how to make the system work best at every level
for the ultimate consumer, the patient. We will absolutely see this
behavior change, and all the supports available to help it change, when
the system makes its living in a different way. 
  

    
Joe, what are your thoughts about the "different way"?
  

    
 To first answer Jon's question about people using the Internet to 
self-diagnose:

In  this economy when many people are using every device possible to
avoid spending anything extra, I think people are using the Internet
more and more to find answers and help determine which way to turn when
they really need care.  PEW research
http://www.pewinternet.org/Presentations/2003/The-Online-Healthcare-Revolution
.aspx
that provides the data to indicate that the majority of Americans turn
to the Internet for health information.  Whether they are self
diagnosing and finding alternative treatments, I believe, depends upon
the seriousness of what they are dealing with and whether they still
have health insurance.  Most people who are unemployed and  have no
health insurance are more inclined to avoid the health care system 
because they cannot pay out of pocket.  Even those individuals who have
health insurance but are under-insured, (which is the majority of
Americans,) are avoiding costly procedures and tests because they
cannot afford the co-payments.  As much as they can, they are not
self-diagnosing, but they are putting off today, health issues  that 
they might have to face later.  This is a serious issue for everyone
because these health issues may become considerably more serious with
the passage of time. 
  

    
I do not agree with Joe that no matter how empowered or engaged you
are everyone ignores you.  The majority of health care providers out
there are caring individual who have chosen this profession because
they want to heal and help people.  Of course like everyone else they
want to make a living wage for their time and efforts. But I think it
is extreme to say that patients, whether they are empowered and engaged
or not are ignored.  

There is no question that the system needs radical change in the way
health care providers are compensated for their work. We all know that
fee for service does not work on many levels.   I do, however, believe
greater patient participation and presence cannot do anything but
impact and benefit the system in a very positive way and help to bring
about some of the financial changes that the system requires. 
  

    
> what are your thoughts about the "different way"?

One of the key things that differentiates my thinking from almost
everyone else that I have seen is this: Everyone agrees that the way we
pay for healthcare doesn't get us what we want. Then everyone says,
"Here's this other way. Do it this way." No one expects that we pay for
our food all one way, or housing, or electricity. There are many
options, many different ways to fit the thousand different niches. 

In healthcare, we all have (mostly) the same desire: Access to all
that the system can offer, in ways that we can afford. But we are in
many different life situations, by age, health condition, employment
status (and kind of employer), and so on. And the providers of
healthcare can be equally varied.

There are many different ways to escape from (or even just mitigate)
the strictly insurance-supported, commodified, fee-for-service payment
system. We don't have to shift the whole system away from it, just
enough that the institutions strongly feel that they are competing to
provide the ultimate customer (the patient and patient's family) the
best health and healthcare for the least money.

Some of these ways include: 
   o   bundled payments with full published prices for big things
(like, a replaced hip costs X dollars, soup to nuts) 
   o   capitation (like Kaiser) backstopped by the right quality
measures 
   o   primary-care-based alternative quality contracts (with all the
money going through the primary care providers, backstopped by outcome
and quality measures) (see: Blue Cross/Blue Shield of Massachusetts)
   o   warranties and guarantees (Yes, seriously. Why not?)
   o   stripping the health plans of their ERISA immunity from
malpractice suit (so that they have take real financial risk for bad
outcomes)  
   o   providing employees with full "medical home" primary care
clinics in the workplace for free from dime one 
   o   paying primary care providers directly for a specific panel of
primary care services, instead of through insurance companies (keyword:
"Direct care")
   o   paying providers as teams, based on the health outcomes of
their panel of patients, rather than as individuals based on the volume
of services (cf: Alaska Natives Health Service)
   o   focussing special services on the "frequent fliers," the 5%
with complex chronic problems who consume 50% of the healthcare
resources (cf: the Atlantic City Special Care Center, the Camden
Healthcare Coalition)
   o   paying for outreach teams that work with primary care practices
(cf: the Vermont Blueprint)
   o   carefully titrated HSAs and high-deductible health plans so
that the customer/employee/patient has just the right amount of
financial risk for making smart healthcare decisions (along with the
right kind of support to make better decisions and to mitigate their
health risk)

[Can you tell I've been writing a book about this?]

Every one of these things (and many more besides) removes the provider
from the "providing more billable things" conundrum and focuses them
on "help the customer become and stay healthy." All are do-able within
our current system. All can be tweaked to help the poor and the
unemployed or underemployed; all can be subsidized. The real key is not
who pays, but what you pay for, how you pay, and whom you pay.
  

    
> I do not agree with Joe that no matter how empowered or engaged you
are everyone ignores you.

Neither do I, because I didn't say that. I was characterizing
(exaggerated ever so slightly for vividness) one of the two sides of
the discussion in the last 20 posts. 
  

    
Joe,

I do agree with everything you have described above.  You do obviously
know this area and your clearly stated ideas and examples will
hopefully come to fruition in the New Year.  

I believe, that the empowered, enlightened, engaged, educated
e-Patient can and should be a part of this conversation and of the
effort to bring about some of these changes so that the end result
reflects what is best for the patient, somewhat for the provider and
not just for the system.  That is a tall order given our current
political climate but with forward thinkers such as yourself and
level-headed leaders such as Jon this too can happen. 

Thank you for the opportunity to have this discussion with you both.
  

    
Joe, that's a really interesting list, and the idea of a smorgasbord
probably fits our fractured politics real well. I would add to it
killing the private insurance companies. As a provider (and I;m sure
every other provider in a fee-for-service setting will agree), I am
constantly amazed at the waste of that system, whose overhead,
according to people whom I trust on these things, is somewhere between
200 and 300 billion dollars a year. And that's not counting the time
and staffing that goes into wresting money (and accountability) from
them. Their job is to hang on to our money for as long as they can, and
they are really really good at it.

As for this

>The majority of health care providers out there are caring
>individual who have chosen this profession because they want to heal
>and help people.  Of course like everyone else they want to make a
>living wage for their time and efforts. But I think it is extreme to
>say that patients, whether they are empowered and engaged or not are
>ignored.  

I think that's probably true, although it is only a majority and by no
means everyone. Especially when you consider that most people chooe
the medical fiedl when they're very young, and before they are fully
educated, which means that you get a mix of idealism and cluelessness
that can be a problem down the road. And that education still doesn't
include enough about how to deal with patients as people, nor does it
do much to teach physicians how to use (as oppose to abuse) power. I'm
sure there are pockets of practitioners who are really happy about
sharing power with their patients, but they have yet to arrive out here
in the hinterlands. LIke the doc, a young guy, who, having seen one
elevated blood pressure reading of mine, and with no other information
about me or my history (years and years of normal bp), said "Well, I'm
not going to put you on blood pressure medication yet." Which is
simultaneously good practice (i.e., don't jump the gun) and bad (i.e.,
watch your verbs.) Taht and the fact that "living wage" is not exactly
the expectation of your average health care provider, especially not
one with six-figure student debt, means that it's going to be a long
slog to something better.
  

    
> the idea of a smorgasbord probably fits our fractured politics real
well. 

A key question underlying my book is: Can we reform healthcare
_without_ having to win a massive political battle not only now but
perpetually? In other words: Is there a change path that will stick?

> I would add to it killing the private insurance companies.

In other words, "single payer." I know this is controversial on the
Well (as elsewhere), and I have a long discussion of it in the book. I
have come to the conclusion that while "single payer" might be a good
idea, it is neither necessary nor sufficient for reforming healthcare,
and can be a huge distraction and energy sink into political battles.
What _is_ necessary is much stronger controls on health plans, and
alternatives to health plans. Some of the alternatives I sketched out
above. _Any_ system that does not pay fee-for-service will lessen the
income and power of the insurance companies, since they make their
living by taking a percentage of the money paid through them as
premiums. Key controls include:
   o   ending the ERISA immunity (as I mentioned)
   o   enforcing the MLR (medical loss ratio) rules in the PACA, which
force health plans to return 80% (or 85% for large plans) of the
premium dollar in payment for medical resources — a lot of your waste
goes away right there, and it doesn't really matter what they do with
the other 15% or 20%
   o   enforcing the end of the "pre-existing condition" ban in the
PACA - health plans must take all comers, and must pay for all covered
conditions
   o   criminal prosecution of companies and their executives for
patterns of breaking their contracts and refusing payment for things
they have contracted to pay for, and have approved payment for
   o   The "Swiss Rule:" Health plans in Switzerland must pay _all
claims_ within 20 days, no screwing around. If they seriously believe
they are being defrauded, they can pursue the same legal remedies as
any other company, but they cannot withhold payment

We have to tame the insurance companies or put them out of business.
Taming them is a lot more politically viable. It's easy to attack
"single payer" as a "socialist" government takeover. It's not so easy
to campaign on the virtues of allowing health plans to defraud,
impoverish, and kill people.
  

    
A new Inkwell conversation started today, and Nancy had agreed to a
two week conversation, however we still have momentum, so feel free to
carry on. Meanwhile many thanks to Joe and Nancy for a great two-week
exploration of the e-patient's world and the future of healthcare.
  

    
>We have to tame the insurance companies or put them out of business.
>Taming them is a lot more politically viable. 

I am sure that is true. And while I think the idea of criminal
prosecution is a dandy one, for the most part that taming will take
place not with whips and chairs, but with nuggets and praise. In other
words, through regulation by captive agencies. Corporations, I think,
will always be better at finding their way around regulations
(especially when they in effect write the regulations) than regulators
will be at controlling corporations. 

For instance, I have not received any payments from Blue Cross since
about September. Why not? Well, somehow the wrong tax i.d. nbumber got
associated with my provider number, which ended up triggering a
rejection code referring to "provider address incorrect." Which they
sent to me at, you guessed it, the provider address I had supplied,
which was of course correct.  I figured that out with the help of the
company rep in October. The solution was to create a new provider
number. I won't bother telling you what kind of chaos that set off,
only to poitn out I still have not gotten paid. Meantime, someone at
Blue Cross is getting paid to sort this out, which helps them justify
their rate hikes, and all the while they're holding onto my money. 

And then there's the company that United HealthCare pays to contact me
every time I submit a claim to UHC, offering me "expedited payment" if
I agree to a discounted fee. They'll trade 20 percent of my fee for a
10-day increase in payment. But the letter they send  is worded very
cleverly to make it seem like this is the only way you'll get paid, and
indeed if you don't respond, they will continue to send letters and
faxes and even make phone calls until you call them back and say you're
not interested in their extortion. This scam must work--UHC pays this
company to run it, but clearly it increases the cost of health care.

Point is, they companies are only doing what companies do: ensuring
their profit, which in the case of health insurance means holding onto
money as long as possible. It's hard to imagine regulations or even
laws that will stop this from happening. 

A market of nonprofit health insurers might work, but as long as they
are for-profit corporations, I think they're gonna waste a lot of
dollars and make people nuts in the bargain.
  

    
Very interesting. I had not heard of that second trick. 

What kind of doc are you, Gary?

You are certainly correct that regulation is more problematic than
simple elimination. The kinds of regulation that will work best are the
big simple ones, like rate review, the MLR cap, and eliminating the
ERISA immunity, rather than micro-regulation.

As for your Blues story, once again it's all about incentives. There
is no downside whatsoever to the Blues to be late in paying, whatever
the reason or excuse. None. And all kinds of upside. As long as the
system is built that way, that's what we'll get.

But I also see no sign that non-profit health insurers are much of an
answer. I see a lot of bad behavior by many of the Blues, for instance,
many of which are still non-profit. Andrea can tell you stories about
the Blues of Michigan, for instance, and I think they are still
non-profit. 
  

    
Once we prosecute a couple of health insurance companies and hospitals
under RICO, and confiscate them, I figure the rest will fall in line
pretty fast.
  

    
There's been a lot of activity and some deals pending  with insurers
teaming up with hospitals kind of like the Kaiser arrangement.  What is
your take on that type of arrangement and does it solve some of these
payment issues?  Does this type of arragement mean better or worse care
for the patients?  I have mixed stories from patients at Kaiser.