1. White
Paper
Patient
Advocacy:
A
STARR
Approach
to
Owning
Your
Own
Healthcare
Vicki
Whiting,
Ph.D.
Gore
School
of
Business
Westminster
College
1840
South
1300
East
Salt
Lake
City,
UT
84105
(435)
640-­‐2286
(801)
484-­‐3767
-­‐
fax
vwhiting@westminstercollege.edu
Shelley
Braun,
Ph.D.
Associate
Director
Utah
Health
Policy
Project
Adjunct
Professor
Westminster
College
1840
South
1300
East
Salt
Lake
City,
UT
84105
(435)
640-­‐2286
(801)
484-­‐3767
-­‐
fax

2. More
and
more,
people
who
are
ill,
along
with
their
families,
friends,
and
caretakers,
find
themselves
lost
in
a
chaotic
swirl
of
medical
procedures,
practitioners,
and
paperwork.
With
an
increased
complexity
of
and
reliance
on
technology
by
health
care
practitioners,
many
patients
find
themselves
on
the
margin
of
medical
encounters
instead
of
at
the
center.
This
is
particularly
problematic
for
those
individuals
for
whom
the
mainstream
evidence-­‐
based
treatments
fail.
While
evidence
based
protocols
are
vital
to
improving
patient
care,
they
are
based
on
the
best
evidence
for
the
most
people,
that
is,
they
work
at
the
population
level;
they
absolutely
do
not
serve
the
outliers.
A
danger
of
such
protocols
is
that
practitioners
buy
into
the
idea
that
they
should
work,
and
are
often
at
a
loss
to
offer
an
explanation,
no
less
an
alternative
when
they
fail.
The
resulting
frustration
can
result
in
blaming
the
patient
for
the
failure
of
the
treatment.
Applying
the
same
failed
treatment
over
and
over
again,
as
was
the
experience
of
one
young
woman
(interviewed
by
Braun),
is
not
only
harmful
but
demoralizing.
Patients
ought
to
be
at
the
center,
not
the
margins,
of
care.
To
address
the
challenge
to
conventional
medical
practice
to
bring
the
outlier
patient
into
the
center
of
care,
we
propose
the
following
SSTAR
approach
to
coordinated,
collaborative
care,
centered
on
committed
engagement
by
patients
and
their
families,
friends,
and
caretakers.
SELECT
the
right
medical
team
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3. Select
The
Right
Medical
Team
Identify
a
collaborative
and
cooperative
team
of
medical
practitioners
who
listen.
This
team
is
anchored
by
a
local
“willing
doctor”
who
is
able
to
listen
to
the
patient,
and
his
or
her
family,
friends,
and
care-­‐takers.
This
doctor
will
take
a
new
look
at
the
whole
picture
of
the
illness,
of
the
patient,
of
the
person
who
is
sick,
as
many
times
as
it
takes
to
find
the
right
diagnosis
and
the
right
treatment
while
minimizing
unnecessary
tests,
procedures,
medications,
and
pain.
The
medical
team,
made
up
of
a
combination
of
practitioner
levels
(MD,
NP,
PA,
RN,
OT,
PT,
etc),
will
collaborate
with
the
patient,
and
coordinate
their
communication
and
care
among
team
members.
Whiting
has
created
an
integrated
team
for
her
son,
Kevin.
This
group
of
practitioners
collaborates
with
Kevin’s
self-­‐reporting
(see
below)
and
each
other
to
integrate
care.
For
example,
before
changing
a
medication
....
2/12/12 12:26 PM
Comment [1]: Need
Vicki’s
story
Shape
the
Conversation
Speak
up
for
yourself
or
find
someone
who
can
speak
for
you.
Our
clinical
medical
system
is
a
powerful
conglomeration
of
knowledge,
expertise,
and
resources—one
in
which
the
person
of
the
patient
can
easily
be
lost,
pushed
to
the
margin
of
the
medical
encounter.
It
is
a
daunting
task
to
speak
truth
to
power
under
the
best
of
circumstances,
yet
imperative
to
the
diagnosis
and
therapeutic
management
and/or
resolution
of
difficult,
chronic,
and
outlier
conditions.
Particularly
important
when
a
patient
doesn’t
fit
into
the
standard
of
illness
etiology
and
medical
practitioners
are
at
a
loss
for
explanation.
Braun
experienced
this
herself
when
being
treated
for
an
ulcerated
cornea.
She
found
herself
being
asked
the
same
questions
over
and
over
again
about
her
personal
contact
lens
care
at
each
of
3
visits,
and
felt
blamed
for
her
condition
although
her
care
regime
of
20+
years
had
never
before
resulted
in
any
eye
issues
at
all.
Finally,
exasperated,
she
replied
to
the
third
doctor’s
repeat
question
about
contact
lens
care:
“I
am
not
willing
to
have
that
conversation
with
you,
but
I
will
have
a
conversation
about
how
to
reduce
the
risk
for
repeat
corneal
ulcers.”
This
simple
assertion
and
re-­‐direction
of
the
conversation
yielded
important
information
about
choices
she
could
make
to
ensure
eye
health
in
the
future,
and
reminded
the
doctor
that
she
was
a
person,
not
an
eyeball.
Take
Control
of
Your
Information
Take
ownership
of
your
medical
information.
Self
track
your
quality
of
life
index
daily
and
keep
a
copy
of
your
medical
record;
it
belongs
to
you.
Patients
have
a
unique
contribution
to
make
to
their
care:
the
experience
of
being
sick.
Traditionally
in
clinical
medicine,
the
patient’s
experience
of
his
or
her
illness
and
subsequent
treatments
is
relegated
to
the
(inferior)
category
of
subjective
information.
In
the
hierarchy
of
clinical
diagnostic
information,
objective
input
(test
results,
images)
is
considered
more
reliable,
thus
more
valuable,
than
subjective
(a
patient’s
experience)—
despite
the
fact
that
early
career
medical
students
spend
a
lot
of
time
learning
to
take
information
from
their
patients
in
the
physical
exam.
Indeed,
at
a
recent
Global
Health

4. conference,
after
one
of
the
authors
(Braun)
was
taken
to
task
by
a
well-­‐established
late
career
doctor
for
proposing
that
this
objective-­‐subjective
hierarchy
is
deeply
entrenched
in
our
medical
system
today,
a
medical
student
countered
with
the
statement
“yes
we
learn
it
but
it
quickly
gets
pushed
down
into
being
unimportant
compared
to
all
the
other
diagnostic
tools
we
are
learning.”
We
propose
that
patients
“self-­‐track”
a
few
quality
of
life
measures
(following
Whiting’s
appetite,
pain,
energy—APE—index
used
during
the
long
experience
of
her
son
Kevin’s
illness),
a
few
times
a
day
on
a
simple
5
point
scale.
Items
important
to
track
will
vary
from
patient
to
patient,
and
might
include
sleep,
pain,
appetite,
energy,
drudgery
of
daily
therapeutic
routine,
support.
This
turns
a
patient’s
subjective
measures
into
a
relative
quantitative
measure,
which
the
health
care
providers
can
include
and
correlate
with
specific
treatments
and
medications.
Today’s
medical
record
is
comprehensive,
yet
fragmented.
Practitioners
are
hard
pressed
to
keep
in
sight
the
topography
of
a
patient’s
illness.
It
is
that
big
picture,
the
30,000
ft
view
that
is
vital
to
the
process
of
seeing
patterns
and
fitting
the
often
complex
assortment
of
puzzle
pieces
together
in
the
course
of
a
patient’s
diagnosis
and
treatment.
We
propose
that
patients
create
a
one-­‐page
timeline,
or
history,
of
their
illness,
recording
seminal
events
and
treatments
(with
a
simple
“worked”
or
“didn’t
work”
indicator)
in
chronological
order.
This
document
can
be
taped
to
the
front
of
the
medical
record
and
easily
referred
to
as
a
quick
guide
for
medical
practitioners.
In
addition,
patients
may
want
to
create
and
carry
a
more
comprehensive
timeline
including
more
detail
about
specific
treatments,
dosages,
and
their
efficacy,
including
outcome.
Ask
For
Help
Hire
a
healthcare
advocate,
identify
a
Center
of
Excellence
for
your
condition,
and
research
your
illness.
It
is
virtually
impossible
to
advocate
for
and
defend
oneself
in
the
best
of
circumstances,
no
less,
when
sick,
in
pain,
worried
for
life,
and
concerned
about
the
not-­‐
sick
parts
of
life
like
keeping
a
job,
holding
a
family
together,
and
keeping
one’s
finances
intact.
A
local
healthcare
advocate
can
be
the
point
person
for
the
medical
team
and
the
liaison
between
the
patient
and
the
medical
system.
It
is
the
advocate’s
first
priority
to
fight
for
the
well-­‐being
of
the
patient.
A
Center
of
Excellence
looks
for
new
and
more
effective
diagnostic
tools
and
treatments
for
2/12/12 12:42 PM
those
inevitable
individuals
for
whom
the
mainstream
evidence-­‐based
treatments
fail.
Comment [2]: I
need
to
rework
this
While
evidence
based
protocols
are
vital
to
improving
patient
care,
they
are
based
on
the
section
I
poached
this
for
the
beginning
best
evidence
for
the
most
people,
that
is,
they
work
at
the
population
level;
they
absolutely
do
not
serve
the
outliers.
A
danger
of
such
protocols
is
that
practitioners
buy
into
the
idea
that
they
should
work,
and
are
often
at
a
loss
to
offer
an
explanation,
no
less
an
alternative
when
they
fail.
The
resulting
frustration
can
result
in
blaming
the
patient
for
the
failure
of
the
treatment.
Applying
the
same
failed
treatment
over
and
over
again,
as
was
the
experience
of
one
young
woman
interviewed
by
Braun,
is
not
only
harmful,
but
demoralizing.

5.
Rally
Support
Enlist
the
help
of
your
family
and
friends
to
track
and
ensure
your
quality
of
life.
Everyone
who
cares
about
the
patient
can
play
a
role
in
lending
support.
Friends
and
family
can
visit,
can
provide
respite
to
caretakers,
and
can
keep
a
hawk’s
eye
on
care
in
hospital.
The
genius
of
surrounding
the
patient
with
people
who
care,
is
that
they
can
dedicate
themselves
to
the
effective
care
and
compassionate
treatment
of
one
individual
while
the
medical
practitioners
must
care
for
many.
In
addition,
this
support
team
can
keep
at
the
forefront
the
day-­‐to-­‐day
quality
of
life
issues
so
often
lost
in
clinical
care.
Our
proposed
5-­‐pronged
SSTAR
approach
surrounds
the
individual
with
a
“circle
of
defenders,
made
up
of
a
team
of
individuals
who
will
coordinate
and
advocate
for
him
or
her.
This
pulls
the
patient
as
person
back
to
the
center
of
care.
SELECT
the
right
medical
team
2/12/12 Stick_Figure_by_101stickfigure101.jpg (488×527)
RALLY
SHAPE
support
the
conversation
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