RespirTheBellCurveCF

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The Bell Curve
Is it okay to be average?
Who is the average
person in this school,
class, ect?
Is trying hard enough?
See Falling Down.
Meaningful way to measure the immeasurable
• Once you have some
data what you do with
it = ingenuity that
makes a dif. In lives
grades, $, politics,
and so on.
• We’ll see how this
applies to treating a
rare fatal ailment of
the respiratory system
Case study: Annie, Signs/symptoms
• Salty taste to the skin
• Wheezy breathing
• Small end of the growth
chart
– Not quite
malnourished, but not
healthy
– “Failure to thrive”
– Can be lots of causes:
GH, lead poisoning,
HIV, parasites
– Do a sweat test:
measure conc of Cl in
sweat
Diagnosis
• High Cl = Cystic
Fibrosis
• Recessive gene
carried by ~ 10 mil
Americans
– Sits on arm of
chromosome 7
– 1K kids a year
diagnosed
Pathology
• Mutant protein messes with
cell’s metabolism of Cl
– Cl build up thickens
secretions around body
– Flow of digestive
enzymes from pancreas
blocked: less able to
absorb food
– Thickened mucus covers
airways, shrinking lung
capacity, till you have
none
Prognosis Lucky for Annie
• She lives in Cincinnati.
• C. Childrens Hospital reputation
as one of the best in the country
– Where the “bible” of the
specialty was written
– Staff skilled, energetic,
dedicated
– Staff learns about patients
before meeting them
– They give you a summary of
your visit at the end.
• After a meeting: median survival
for CF 30 years in Annie’s life
that could go to 40
Treatment
• Enzyme pills, other
supplements, calorie
rich diet, percussive
therapy to loosen
mucus in lungs,
inhalant
• New life for Annie's
family
However and but you see
• CCHospital not the
best, just an average
program.
• So what?
• At an avg. center
patients live ~ 30
• At the top ~46
• And for some
predictors like Lung
capacity CCHospital
was in the bottom
25%
• And CCH knows
these stats.
Assumptions vs. Reality
• Dif among hospitals &
doctors insig.
– Everyone’s pretty
good
• Evidence shows its
more like a bell curve
What’s the Bell curve mean?
• For a hernia operation…
– Bottom %: 1 in 10 chance
of recurrence
– Middle group: 1 in 20
chance
– Elite: 1 in 500
• A hernia is a protrusion
of a tissue, structure, or
part of an organ through
the muscular tissue or the
membrane by which it is
normally contained
• For N.I.C.U. death rates: 16, 10, 6 %
• In vitro fertilization attempts: 15, 40, 65 %
success rates
• SOME PLACES ARE BETTER THAN
OTHERS
• Are all Dr.s doing the
best job they can?
• Giving patients the
best chance?
• Should Drs have
published win/loss
records? Should
teachers?
• Healthgrades.com will
tell you basic stuff
– Fired before? Criminal
record?
– But you want to know
more than that
• But detailed
comparisons get hard
– 86-92 the gov.
released a “death list”
ranking hospitals by
death rate of elderly
and disabled patients
on medicare.
– Why is this a useless
list?
• Most elderly/disabled
are already sick to
begin with.
• Public ignored
rankings
• Why is death rate for
average patients a
poor indicator?
• It rarely happens and
when it does its
inevitable; cancer, car
crashes
• What do you really
want to know about
your Dr?
• How doctors do in the typical stuff
• Measure of the process
• What steps do they take along the
way
• This huge load of paperwork is
now being studied.
• USNews&WorldReport ranks
hosptials by
– Ability to excel at treating a
variety of demanding illnesses
within a specialty, affiliations
with medical schools, surveys
of physicians, reputation,
d.rate, advanced facilities
Back to CF
• CFF Always been ahead
in recording care
• In the 1960’s a guy
named LeRoy Matthews
drove everyone crazy.
– I’m way better than
everyone else
– My mortality is 2%,
everyone else’s is 20%
– No one knew so they did a
study and he was
exaggerating, but he was
better than everyone else
– Just like me.
Be a positive deviant
• Matthews tried every
new approach,
hounded his patients
to treat themselves
• He was aggressive
from the start.
• So everyone started
doing what he did and
CF mortality declined
• Matthews has stayed
ahead of the bell
curve even as
everyone else
improved.
– Avg 30 years vs. 46
• It’s tough explaining
why variability
remains.
• CF Is incredibly
standardized. We
know how to do it
right.
• What happens when
patients find out about
variability?
• CChospital decides to
tell patients where
they are on the bell
curve.
• Why? They got a
boatload of $ from a
guy named Don
Berwick
Berwick
• Former pediatrician; founded
Institute for Healthcare
improvement
– Gives out big $ for trying
new ideas
– Harvard Prof.
• 2002 Modern Healthcare
called him the 3rd most
powerful person in American
healthcare after the secretary
of health and human services
1st, head of medicare &
medicaid 2nd, where is surgeon
general?
• Good paper idea: Who is
currently the top 3 most
powerful people in healthcare
in the U.S.?
Why is Berwick powerful
• Because of how he thinks
• What happens to flawed
organizations in a
disaster?
– Firefighters in a forest fire
– Students in a school
shooting.
– Cthulhu, Godzilla, or zombie
outbreak,
– Indiv. Lose the ability to think
as indiv, and act together.
• This is happening to
medicine
Berwick’s solution
• Measure processes
• Be more open about
what we are doing
– Patients should have total
access
– No secrets
– This is a moral good, he
claims
– Is it?
• Should students have
total access to what
teachers do, if that’s the
case should teachers
have total access to what
students do?
Berwick got his $ from Robert
Wood Johnson Foundation
• nation’s largest NP Org.
devoted exclusively to
health.
• $10 billion in assets,
generating grants
approaching $500 million
a year
• From 91 -03 spent 446
mil fighting tobaccoo cos
• Now using lessons from
that to target obesity.
• Opposed by tobaccoo
and alcohol groups
• The guy who made
Johnson & Johnson
– WWII Brigadier Gen.
CChospital tells its patients where it stands
• They didn’t make excuses, and to the
patients they appeared desperate to do
better.
• Patients stayed because they known these
drs/nurses for years, and believed in
them.
– Why is belief in that sentence? This is
science.
Other NPO sources of big $
• Howard Hughes Memorial
Institute
– Worth ~16.3 bil,
– For years Hughes was the
sole trustee and put all of his
companies stocks into it,
making a huge defense
contractor a tax exempt
entity
– The man
• Wellcome Trust in UK
– Worth ~26.8 Billion
So CCH tells the patients
• Some patients would
leave if things didn’t
improve.
• The hospital put
patients’ families on
review committees to
assess what the
hospital could do.
• They got the names
of the best CF centers
and went there
Truth, Justice, The
American Way
The best
• Minnesota CF cntr. At Fairview-University
CH in Minneapolis
• Headed by Warwick, the guy who
originally studied LeRoy Matthews claims
in the past
• Does whatever he can
• They do everything everyone else does,
but they do it dif.
Compare CCH and MCFC
• Teen might be at 67% lung
capacity, down from normal
80%
• do some Q & A
– School? Meds? Calories?
• send a nurse home to check
• And schedule an earlier return
visit than normal
• Teen might be at 90 % down
from normal 110% (They do
better than normal)
• Do some Q & A
– Same as the other, but they
get more intense, aren’t
satisfied with answers
– Will gently remind patients of
mortality until they cry.
– FOCUS, AGRRESIVE,
INVENTIVE
– Don’t like it, go die somewhere
else
– Not everyone can work with
this, but he gets results
The Minneapolis looks at it
• CF patients are good
scientists, they experiment with
their treatments.
• Sometimes they stop treatment
and they don’t get sick and
think we’re nuts
• BUT: chance of getting sick
with CF on any one day is
0.5%
• THEN: chance of getting sick
with CF on any one day with
treatment is 0.05%
SO WHAT…
• 99.5% chance of health
vs 99.95% chance is
pretty small on one day.
• Over a year that turns
into ~83% vs. 16 %
• ALL THE SMALL
THINGS MAKE A DIF.
– Butterfly/Hurricane
• Warwick has the bedside
manner of Montel
Williams, Oprah, Dr. Phil.
• And he can improvise,
invent, think fast on the
• If that 67% teen was
with Warwick she’d
already have feeding
tube in her
• Warwick doesn’t wait
for national results, he
goes with what works.
• He’s innovated
– Mechanized chest
thumping vest
– New, powerful ways to
cough
• So CCH is changing
to follow his ways
• Current thought is that
Drs rely on science and
skill.
• True that is the basics
of what is expected
• Aggressiveness,
diligence, and ingenuity
can pull you out of
average. Then
everyone has to catch
up to you
• You have to have the
capacity to learn and
change and do it faster
than everyone else
How should the bell curve be used
• Fine the bottom half?
• Inform patients of your
score?
• Correlate pay with ranking?
• Probably
• Insurance co’s hold back
10% of payments until
specific goals are met
• Medicare won’t pay for
intestinal transplants until
surgeons have good track
record
Raises questions
• WHO GETS TO GRADE?
• Are they grading the right things
• Is there shame in being average?
– Not for some things
– But If you’re a professional there is.
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