share with you today the first one is
about a woman named Tony now Tony is a
film producer in a world traveler
she speaks eloquently but she says she’s
a slow reader a few decades ago when
Tony was about 30 she went to her
gynecologist because something just
wasn’t feeling right she went there she
explains everything to him and he says
oh yeah I can fix that
great she says so a few weeks later she
comes back to have a surgical procedure
and as soon as she gets there she is
given a stack of forms to fill out which
is an experience I’m sure many of us
have had she immediately feels
overwhelmed like she doesn’t have time
to read them and besides the words on
the pages don’t make sense to her anyway
so she just signs them she has the
procedure on life goes a few weeks later
she comes back for a follow-up
appointment and as the nurse is checking
her in she says to Tony how are you
feeling since your hysterectomy and
that’s when Tony realized that the
procedure she had undergone had removed
one of her organs she hadn’t asked the
right questions and she just trusted her
doctor to make the best decision for her
how had I allowed someone to take part
of my body she says and I didn’t even
know it then there’s a story of Lili
alia was the daughter among immigrants
who came to the United States from Laos
the Hmong culture has some deeply held
beliefs about medicine they often turn
to rituals to heal and cure people Illya
had epilepsy which meant that she would
have seizures so her US doctors
prescribed her anti-seizure medication
but Leah’s parents did not
speak English so they didn’t understand
the medicine regimens the language
barrier between Leah’s parents and her
doctors kept her parents from ever
really understanding even what the drugs
did this led her parents and her doctors
to battle over her care
her parents elected to use those rituals
instead of the medications that didn’t
seem to be helping her anyway
these clashes ended in tragedy when
Leah’s suffered a devastating seizure
that left her in a vegetative state at
the age of four she stayed that way for
my last story is about me a few months
ago I went to my doctor for a routine
appointment and as I was walking through
the door the medical assistant told me I
had to take a lab test I didn’t ask what
it was for to this day I don’t really
know what it was for but I did it anyway
because it just seemed easier to go
along with it than to ask many questions
you know how you feel rushed when you go
to the doctor’s office even though
you’re the patient it’s supposed to be
about you and your health they’re
speaking a foreign language and you’re
intimidated and it just seems easier to
go along with things than to ask
questions but sometimes it costs you a
few weeks after my appointment I
received a 2,000 dollar bill in the mail
for that lab test because my health
insurance company decided it was not
medically necessary for my care I had to
fight that bill for months now I am a
health care communicator I’m getting my
master’s degree in this very field this
is not supposed to happen to me but it
did as I was fighting this bill I just
kept asking myself why didn’t I just ask
what it was for why didn’t I advocate
for myself now statistically we know
that more than 250,000 people die every
year because of misdiagnosis but we have
no idea how many died because of
misunderstandings misunderstandings are
the common thread through these stories
the ability for Toni and the leaves
me and you to understand health
information is called health literacy
it’s just like regular literacy like
reading books except instead of books
for dealing with health information on
medical forms and prescription bottles
now we can have good health literacy or
we can have poor health literacy if you
have good health literacy that means
that you can look at a prescription
bottle and know that you need to take
your medication twice a day with food
for two weeks until it’s completely gone
but if you are health illiterate you may
stare at that bottle and have no idea
even where to begin sure some of you
remember this guy back in 2000 Rudy
Giuliani was the mayor of New York but
he was also diagnosed with prostate
cancer in an interview shortly after
that he said he was confused at first
about his diagnosis because his doctor
told him that his tests had come back
positive
so mr. Giuliani thought that meant he
was cancer-free
which makes sense because in nearly any
other context positive it’s a good thing
right a positive here meant he had
cancer the former mayor of New York like
many Americans had poor health literacy
I want you to take a look at this
paragraph just take a few moments to
do you understand it if you do
congratulations you have good health
literacy but if you don’t it may as well
look like this right
unless of course you are fluent in
German but what this paragraph is trying
to say is that new and expecting mothers
in the United States can have a nurse
come to their home and show them how to
care for their child so why is it so
hard to understand
that’s because health care information
like that is written at the 10th grade
reading level and above probably more on
the above in that part but most of us
cannot read at the eighth grade level
understanding health information is even
more difficult for people who cannot
read it all and for those who do not
speak English like the least now I want
to be really clear about something
having poor health literacy does not
mean you’re stupid you can be very very
smart well-educated and capable and
still be health illiterate because
health care has its own language if you
don’t speak the language you can’t
understand it now having poor health
literacy can be as simple as not
understanding every single word on that
form you get when you go to the doctor’s
office but it can also mean the
difference between life and death or a
$2,000 medical bill and let’s imagine
for a minute that I have type 2 diabetes
and this is a chronic condition that
requires near constant testing of blood
sugar my doctor tells me what foods I
should eat how to check my blood sugar
how to give myself insulin but imagine
he doesn’t tell me what insulin is what
if he doesn’t tell me what low blood
sugar means like most doctors today
he’ll only spend a few moments with me I
don’t want to waste his time so I don’t
ask many questions besides he’s sitting
there typing on his computer barely
looking at me she’s speaking really fast
and it all seems to make sense until I
leave the office and realize that I have
no idea what just happened now I may
feel overwhelmed to the point that I
don’t do anything to manage my diabetes
which means I’m at risk for blindness
limb amputation and diabetic coma which
could kill me all because I didn’t know
now as I mentioned I am a healthcare
communicator so every day I work with
doctors and nurses to make sure that
their messages are understandable to
people and patients but that’s not
really why I’m here I’m here because
poor health literacy is an epidemic it’s
costing us billions of dollars every
year and it’s increasing the number of
people going to the emergency room I’m
here because poor health literacy is
killing us I’m also here because I have
been a patient who has had to advocate
for myself and my loved ones I am here
because at some point we are all
patients we are all called to be our own
advocates and I want to tell you that
you can do that for yourself and your
loved ones I want to tell you how to
take control of your health now perhaps
the best way for us to improve our
health literacy is by asking questions I
know this is not an easy thing the
doctors and nurses you meet in a
hospital or clinic are smart talented
people who don’t have much time you the
patient are intimidated ashamed scared
to ask the stupid questions but this is
your life your health there are no
stupid questions let me say that again
there are no stupid questions you have
to be bold and stand up for yourself
interrupt when you have questions don’t
be afraid to be difficult don’t be
afraid to be the bossy patient you have
to ask questions like why am I having
this test what does this procedure
include will this medication interact
with my other medications it’s just
covered by my insurance the minute you
do that you take control of your health
when your doctor tells you to do
something repeat it back to them this
will help them correct any
misunderstandings that you have but it
will also help you begin to understand
the information remember doctors use
these
of care words all the time words like
hypothyroidism and renal failure high
blood glucose levels and high
hypertension they are fluent in this
language we are not your doctor may have
no idea you’re even confused tell them
start the conversation I want to give
you three things that you can do to
improve your health literacy the first
one is by asking questions we’ve already
gone over this it is fundamental to
understanding this difficult health
information number two take a notebook
it can be as small as your pocket or it
can be a huge binder overflowing with
papers take it with you when you go to
the doctor write things down the words
your doctor says the instructions she
gives you the questions you have that
you didn’t or we’re afraid to ask
write down the questions before you go
assume that when you get there you will
panic and forget everything you wanted
to ask writing the questions down first
will help you know where to start but
maybe that’s not enough
maybe your diagnosis is too overwhelming
maybe it’s too hard to take notes and
ask questions at the same time these are
not easy things what can we do then we
can ask for help number three take a
loved one or a friend
they are your advocates a doctor’s
appointment can be so full of big words
that you may not even hear them in
emergencies or when hearing difficult
news you may be so absorbed by shock
that you don’t even hear them in these
times having someone with you to be your
eyes and ears to ask questions and make
sure you get everything you need can
make all the difference they will hear
things you don’t they may think of
questions you haven’t even thought to
ask they can help make sure you don’t
leave that office without everything you
need to take care of yourself they can
know firsthand how an emergency can
change your understanding of even simple
words about this time last year my
grandmother who is from Iowa came to
visit me here in Arizona
and she had a heart attack she’d never
had heart problems before so the
diagnosis was a shock on top of the
stress that we were already feeling
about three minutes after the doctor
told us what was wrong with her
my grandfather turned to me and said did
he say heart attack within 24 hours she
passed away from a heart condition that
we didn’t even know she had now my
grandfather is smart but the emergency
of that situation the sheer shock of it
kept him from understanding the simple
words heart attack in that instance he
wasn’t even the patient he was the
patient’s loved one so imagine what it
is like to hear devastating news about
your own health it can be debilitating
having an advocate means that when
you’re stuck on the first thing your
doctor said your second set of ears is
asking questions about everything that
came after that when you’re overwhelmed
by your diagnosis your advocate is
taking notes about the medication that
will treat your new illness now doctors
can do better too they can create shame
free environments where they make time
for questions and assume we need more
information than they think but you the
patient cannot control that you can hope
your doctor does this but in the end you
can only take care of yourself and your
loved ones there are many tools we can
use to improve our health literacy but
some of the best ones are simple ask
questions and advocate for each other
interrupt when you have questions or
need more information take notes on
everything that happens be the bossy
patient take control of your health
thank you
you [Applause]