Owning your own health care sstar model
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The document presents a STARR approach for patients to take ownership of their healthcare. It involves: 1) Selecting a collaborative medical team anchored by a local doctor willing to listen to patients. 2) Rallying support from family and friends. 3) Shaping conversations to keep patients at the center, such as speaking up for oneself. 4) Asking for help from others when needed. 5) Taking control of personal health information. The approach aims to address issues outliers face and empower patients in a complex healthcare system.
![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](https://image.slidesharecdn.com/owningyourownhealthcare-sstarmodel-121104150545-phpapp02/85/Owning-your-own-health-care-sstar-model-3-320.jpg)
![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.](https://image.slidesharecdn.com/owningyourownhealthcare-sstarmodel-121104150545-phpapp02/85/Owning-your-own-health-care-sstar-model-4-320.jpg)
Owning your own health care sstar model
- 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 RALLY SHAPE support the conversation ASK TAKE CONTROL for help of your information
- 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 fc07.deviantart.net/fs70/f/2010/087/c/4/Stick_Figure_by_101stickfigure101.jpg 1/1 ASK TAKE CONTROL for help of your information