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The Patient Voice: Getting Heard in Healthcare | Stacey Lee | TEDxJHUDC


suppose I told you you possess the

single most powerful medical diagnostic

tool to get and stay healthy

what’s more suppose I told you that use

of this tool doesn’t depend on whether

your doctor is in network or out of

network you don’t have to reach some

deductible before you can use it in fact

use of this tool isn’t tied to your

health insurance at all but wait it gets

even better suppose I told you that you

can increase the effectiveness of this

tool at any time so what is it what is

this powerful diagnostic tool that you

already possess it’s your voice your

ability to effectively communicate with

your doctor is the single most powerful

diagnostic tool you have to get and stay

healthy but what happens when that voice

isn’t effectively used when a patient’s

voice isn’t heard either because it’s

disregarded or the words just don’t come

out when that happens it causes tens of

millions of Americans to suffer

unnecessarily every year it causes

emergency room visits and misdiagnosis

that cost our health care system over

300 billion dollars each year and when

that happens it creates a silent

dissonance over treatment decisions that

place a tremendous emotional and

physical strain on patients because they

feel their voices aren’t being heard I’d

like to share with you one of those

stories one of those voices this names

Peter and Peter’s in my health law class

I saw Peter on Wednesday nights from 6

p.m. to 9 p.m.

Peter was a very good student came to

class on time turn Dennis deliverables

was actively engaged in class

discussions afterwards we talked about

his marathon training over the course of

the term

I watched Peter go from that engaged

prepared student to someone who missed

the class and when he was there was so

exhausted he could barely keep his eyes

open so I asked Peter what’s going on

and he said I don’t know I went on a

training run and I found a tick on my

thigh

knowing that ticks can carry Lyme

disease people Peter saved the tick made

an appointment with this doctor and

wanted to discuss it during his 15

minute appointment with his doctor he

explained what happened and showed him

the tick and asked him to have it tested

the doctor looked at him kind of laughed

and said uh we don’t do that come back

when you develop symptoms a couple weeks

after the bite Peter started to feel

achy developed reoccurring fevers felt

exhausted and generally rundown he made

another appointment this time his doctor

came into the exam room carrying his

laptop and proceeded to run through a

series of Lyme disease indicator

questions after checking a series of

appropriate boxes

he asked Peter have you developed a

bullseye rash which according to his

laptop

it’s a definitive sign of Lyme disease

when Peter said no his doctor said come

back if and when you do now at this

point I have to interject myself into

the story by now Peter had withdrawn

from my course with the demands of work

in battling extreme exhaustion he

couldn’t keep up with the course

deliverables so he would

from my course we kept in contact with

email so I can tell you what happens

next several weeks later Peter developed

105 degree fever and couldn’t walk in a

straight line his friends took him to

the emergency room and the medical staff

started running tests while there Peter

repeatedly voiced his concern that he

had Lyme disease but the medical staff

said hey for that to be the case you

would have the rash

fortunately for Peter before he was to

be discharged the rash appeared it was

only then that Peters voice was heard

the medical staff treated him for his

Lyme disease and Peter was discharged

with a three-week supply of antibiotics

in case you’re wondering yes Peter made

a full recovery

he even Rhian rolled in my class and got

a pretty good grade the effectiveness of

your voice rests in your ability to get

your doctor to listen and hear you but

as we saw with the case of Peter

sometimes that can be difficult for

instance the research shows that a

doctor spends on average 15 minutes with

each patient in some cases only 11

minutes it’s not a lot of time however

in that same amount of time in that time

of a doctor’s appointment today you will

leave with the three part prescription

on how to effectively use your voice to

get and stay healthy it requires you to

acknowledge the challenges in getting

your voice heard anticipate your

experiences prepare for those doctor’s

appointments and finally amplify your

voice with story now I’d like to spend

some time on your first part of your

prescription

the challenge of getting your voice

heard now going back to the 15 minutes

that your doctor spends with you that’s

not a lot of time

studies show that during that time with

your doctor one of the things that’s

most important to patients is to explain

why they’re there what hurts the

research shows that it takes the average

person about three minutes to explain

the nature of their visit that same

research shows that a doctor interrupts

you 12 seconds in it’s hard to get your

voice heard if you’re being interrupted

and cut off in addition it’s not

uncommon for doctors to walk into exam

rooms with their laptop your electronic

health records have become permanent

third parties for the conversation

you’re trying to have with your doctor

as they scroll through their computer

screen checking appropriate boxes try to

maintain eye contact while staying

engaged with you

requires a set of multitasking skills

that can drown out your voice short

doctor’s visits doctor’s interrupting

you the presence of Technology these

challenges may make it easier for your

doctor to hand you a prescription than

to have a 10-minute conversation with

you about lifestyle changes to promote

better health or to ask an unscripted

question that they fear could lead you

down a journey of a 20 minute segue down

memory lane but what’s the cost what’s

the cost of those unasked questions of

those unspoken conversations if you’re

not talking if your doctor isn’t

listening if those conversations aren’t

being had the research shows that

increases the possibility of your doctor

coming up with a wrong diagnosis or

during a test you don’t need

of you leaving your doctor’s appointment

without a complete understanding of what

your diagnosis is or without full buy-in

into your treatment plan so that brings

us to the second part of your

prescription how do you use your voice

effectively to maximize the 15 minutes

you have with your doctor well like for

my talk here today think about your

audience your agenda may not be the same

as your doctor’s his goal is to zero in

on your primary concern yours may be to

go through your laundry list of ailments

in no particular order and no matter how

small a more effective approach might be

to identify your top one or two concerns

if you have more write them down and

bring them with you to your appointment

and ask your doctor to help you

prioritize what makes sense to deal with

at this appointment and what might

better wait until your next appointment

for those concerns have specific

questions the more specific your

question is the more detailed and

explicit your doctor’s answer will be

now you don’t have a lot of time with

your doctor anticipate their questions

and have answers ready for them also

it’s not uncommon that at the end of

your appointment you think of several

questions you’d like to ask at that

point your doctor has a choice answer

your questions briefly now perhaps at

the expense of good clinical care or

schedule another appointment use your

voice and make the choice for them

schedule another appointment and if that

appointments not soon enough

ask about email communication through a

patient portal your voice

can take many forms an email

communication is an effective way to

deal with after appointment and in

between appointment questions now I’d

like to go to our third part of your

prescription what happens when your

voice isn’t heard not because your

question has been disregarded but

because the words aren’t coming out now

this can happen for a number of reasons

it could be because of the magnitude of

the appointment it could be because of

embarrassment or cultural factors or as

in the case of my father a chronic non

complainer who has never asked the right

question my father was a career army

officer and since retiring he’s

experienced a host of medical issues he

was diagnosed with chronic myeloid

leukemia had back problems that

necessitated two surgeries the pain and

my father’s back and legs has made his

ability to walk around the house

unassisted very difficult however he had

never know it from his doctors

appointments Colonel Boyd how’s it going

oh I’m feeling pretty good how’s the

mobility won’t be running any for minute

miles but you know I’m doing all right

and so it went year after year with

unerring consistency until finally after

watching my dad try to move around my

parents house as I watched his scope of

activities get smaller and smaller I

reached the tipping point now I got to

tell you I’m sure there’s a great TED

talk in here for when an adult child

figures out that they need to take the

caregiver reins from their parents but

seeing the note cards that they’re

holding up in the back today’s probably

not the time for

suffice to say that tipping point

finally forced me to have that frank

conversation with my dad and during that

conversation I asked the one question

that apparently wasn’t in his doctor

script dad what do you want and he

admitted that he wanted to be able to

walk in to my grandmother’s 98th

birthday unassisted however he was

afraid that the pain and his back and

his legs would make that impossible I

went to my dad’s next doctor’s

appointment with him and several more

after that to give voice to what he

wanted to tell the doctor his story

instead of getting another prescription

for tramadol for his pain

we got a walking and swimming training

program now all of this didn’t unfold in

one appointment but over several

appointments we put a plan in place that

was eight months ago

On February 12th

my grandmother turned 98 my father

walked in unassisted to bring her her

flowers if you can’t give voice to your

words bring someone with you who can a

loved one a friend a patient advocate

doctors need to know what’s important to

you and the presence of someone else

can raise the level of expectation and

doctors will respond in kind and I can’t

stress enough how your story doctors

need to know what’s important to you

if you rattle off a series of symptoms

hey my shoulder hurts doctor I need an

MRI not memorable

not riveting not informative instead try

the story

my brother had cancer that spread to his

bone and shoulder I’m worried about the

pain in my shoulder or in the case of my

father I want to be able to walk in

unassisted and hand my mother flowers on

her 98th birthday your voice is your

single most powerful medical diagnostic tool to get and stay healthy use it

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