Putting the ‘CARE’ back into Healthcare | Edith Elliott | TEDxGateway

when I was 13 my mom was diagnosed with

when I was 13 my mom was diagnosed with an acoustic neuroma I had no idea what

an acoustic neuroma I had no idea what

an acoustic neuroma I had no idea what this meant it could have been anything

this meant it could have been anything

this meant it could have been anything but I knew it wasn’t good an acoustic

but I knew it wasn’t good an acoustic

but I knew it wasn’t good an acoustic neuroma is a brain tumor and it’s the

neuroma is a brain tumor and it’s the

neuroma is a brain tumor and it’s the type of thing that if you don’t catch it

type of thing that if you don’t catch it

type of thing that if you don’t catch it and remove it quickly enough the patient

and remove it quickly enough the patient

and remove it quickly enough the patient slowly becomes incapacitated and

slowly becomes incapacitated and

slowly becomes incapacitated and eventually dies my mom surgery took 12

eventually dies my mom surgery took 12

eventually dies my mom surgery took 12 hours but by far the scariest moment of

hours but by far the scariest moment of

hours but by far the scariest moment of her illness was the day she left the

her illness was the day she left the

her illness was the day she left the hospital to come home her medical team

hospital to come home her medical team

hospital to come home her medical team gave my family pages and pages of

gave my family pages and pages of

gave my family pages and pages of information that was nearly impossible

information that was nearly impossible

information that was nearly impossible to understand much less act on over the

to understand much less act on over the

to understand much less act on over the following weeks we helped her recover

following weeks we helped her recover

following weeks we helped her recover she had to relearn how to walk how to

she had to relearn how to walk how to

she had to relearn how to walk how to talk and how to feed herself now in my

talk and how to feed herself now in my

talk and how to feed herself now in my mom’s case we had moved halfway across

mom’s case we had moved halfway across

mom’s case we had moved halfway across the country so she could see the best

the country so she could see the best

the country so she could see the best neurosurgeons

neurosurgeons

neurosurgeons in the world and receive the best care

in the world and receive the best care

in the world and receive the best care but even under those circumstances the

but even under those circumstances the

but even under those circumstances the only thing I remember is feeling

only thing I remember is feeling

only thing I remember is feeling overwhelmed and terrified thing is over

overwhelmed and terrified thing is over

overwhelmed and terrified thing is over time we focused on building bigger and

time we focused on building bigger and

time we focused on building bigger and better hospitals training up specialists

better hospitals training up specialists

better hospitals training up specialists and thinking about how to effectively

and thinking about how to effectively

and thinking about how to effectively and efficiently treat but that’s not

and efficiently treat but that’s not

and efficiently treat but that’s not where healthcare ends my mom’s doctors

where healthcare ends my mom’s doctors

where healthcare ends my mom’s doctors had all the training in the world but

had all the training in the world but

had all the training in the world but they face limitations they didn’t have

they face limitations they didn’t have

they face limitations they didn’t have the time needed to prepare us her family

the time needed to prepare us her family

the time needed to prepare us her family to be caregivers at home my family and I

to be caregivers at home my family and I

to be caregivers at home my family and I had all the desire to help my mom in the

had all the desire to help my mom in the

had all the desire to help my mom in the world we just didn’t know how as a 13

world we just didn’t know how as a 13

world we just didn’t know how as a 13 year old I thought this was my story

year old I thought this was my story

year old I thought this was my story alone but I was wrong about 15 years

alone but I was wrong about 15 years

alone but I was wrong about 15 years after my mom’s surgery I found myself in

after my mom’s surgery I found myself in

after my mom’s surgery I found myself in a hospital in India and this is what I

a hospital in India and this is what I

a hospital in India and this is what I saw crowds I learned that in India it’s

saw crowds I learned that in India it’s

saw crowds I learned that in India it’s very common for families to move to the

very common for families to move to the

very common for families to move to the hospital and live there while their

hospital and live there while their

hospital and live there while their loved ones receive care and outside of

loved ones receive care and outside of

loved ones receive care and outside of visiting hours

visiting hours

visiting hours left to do this wait and pray on the

left to do this wait and pray on the

left to do this wait and pray on the other side of the wall

other side of the wall

other side of the wall I met patients like Anoop I sat with his

I met patients like Anoop I sat with his

I met patients like Anoop I sat with his mom and dad when it was time for them to

mom and dad when it was time for them to

mom and dad when it was time for them to return home a nurse came in and gave his

return home a nurse came in and gave his

return home a nurse came in and gave his family a very rushed five minute lecture

family a very rushed five minute lecture

family a very rushed five minute lecture on everything they needed to know to

on everything they needed to know to

on everything they needed to know to keep their baby healthy and safe changes

keep their baby healthy and safe changes

keep their baby healthy and safe changes to his diet medications he’d have to

to his diet medications he’d have to

to his diet medications he’d have to take warning signs to look out for all

take warning signs to look out for all

take warning signs to look out for all of this and more in only five minutes

of this and more in only five minutes

of this and more in only five minutes like many families in India an oops mom

like many families in India an oops mom

like many families in India an oops mom and dad lived hundreds of miles from the

and dad lived hundreds of miles from the

and dad lived hundreds of miles from the nearest hospital they couldn’t read or

nearest hospital they couldn’t read or

nearest hospital they couldn’t read or write and they left overwhelmed and

write and they left overwhelmed and

write and they left overwhelmed and terrified I saw this same story repeat

terrified I saw this same story repeat

terrified I saw this same story repeat itself over and over again and I

itself over and over again and I

itself over and over again and I realized that even though I was

realized that even though I was

realized that even though I was thousands of miles away from home the

thousands of miles away from home the

thousands of miles away from home the fear the families felt I understood it

fear the families felt I understood it

fear the families felt I understood it because I had been there too I also

because I had been there too I also

because I had been there too I also learned that very often what happens to

learned that very often what happens to

learned that very often what happens to a patient is that they’ll end up getting

a patient is that they’ll end up getting

a patient is that they’ll end up getting worse after they go home they’ll have to

worse after they go home they’ll have to

worse after they go home they’ll have to come back to the hospital or they’ll

come back to the hospital or they’ll

come back to the hospital or they’ll suffer from complications that are

suffer from complications that are

suffer from complications that are potentially fatal and that could have

potentially fatal and that could have

potentially fatal and that could have easily been prevented on that first trip

easily been prevented on that first trip

easily been prevented on that first trip I was here as a graduate student and

I was here as a graduate student and

I was here as a graduate student and from Stanford and my co-founders and I

from Stanford and my co-founders and I

from Stanford and my co-founders and I found ourselves wondering why why do we

found ourselves wondering why why do we

found ourselves wondering why why do we push eager people out of the system and

push eager people out of the system and

push eager people out of the system and then only a few days later we expect

then only a few days later we expect

then only a few days later we expect those same people to provide care at

those same people to provide care at

those same people to provide care at home why can’t we take this motivated

home why can’t we take this motivated

home why can’t we take this motivated capable untapped resource the family and

capable untapped resource the family and

capable untapped resource the family and teach them how to provide care what

teach them how to provide care what

teach them how to provide care what would happen if we turned busy hallways

would happen if we turned busy hallways

would happen if we turned busy hallways into classrooms and took people from the

into classrooms and took people from the

into classrooms and took people from the waiting room to the bedside so they

waiting room to the bedside so they

waiting room to the bedside so they could be next to the person that they

could be next to the person that they

could be next to the person that they love when it comes to innovating in

love when it comes to innovating in

love when it comes to innovating in health care we tend to think about the

health care we tend to think about the

health care we tend to think about the latest and greatest new technology or

latest and greatest new technology or

latest and greatest new technology or advancement to treat a specific problem

advancement to treat a specific problem

advancement to treat a specific problem rarely do we take a step back to look at

rarely do we take a step back to look at

rarely do we take a step back to look at the entire system and reimagine it this

the entire system and reimagine it this

the entire system and reimagine it this means that sometimes we overlook or we

means that sometimes we overlook or we

means that sometimes we overlook or we just can’t see a problem that has been

just can’t see a problem that has been

just can’t see a problem that has been right in front of us the entire time

right in front of us the entire time

right in front of us the entire time just waiting to be unleashed

just waiting to be unleashed

just waiting to be unleashed in this case a problem a solution that

in this case a problem a solution that

in this case a problem a solution that is devastatingly simple it turns out

is devastatingly simple it turns out

is devastatingly simple it turns out there are a handful of things that

there are a handful of things that

there are a handful of things that someone needs to know to keep a patient

someone needs to know to keep a patient

someone needs to know to keep a patient healthy after they receive treatment and

healthy after they receive treatment and

healthy after they receive treatment and we found there things that we can teach

we found there things that we can teach

we found there things that we can teach anyone regardless of literacy if done in

anyone regardless of literacy if done in

anyone regardless of literacy if done in the right way and with the right tools

the right way and with the right tools

the right way and with the right tools these are things like how to keep a

these are things like how to keep a

these are things like how to keep a wound and the environment around it

wound and the environment around it

wound and the environment around it clean or how to recognize and react in

clean or how to recognize and react in

clean or how to recognize and react in the event of an emergency there are

the event of an emergency there are

the event of an emergency there are things that the family is more than

things that the family is more than

things that the family is more than capable of doing and we found they’re

capable of doing and we found they’re

capable of doing and we found they’re eager to do the problem is that rushed

eager to do the problem is that rushed

eager to do the problem is that rushed moment when a patient is leaving the

moment when a patient is leaving the

moment when a patient is leaving the hospital to go home doesn’t go very well

hospital to go home doesn’t go very well

hospital to go home doesn’t go very well it tends to be full of medical jargon

it tends to be full of medical jargon

it tends to be full of medical jargon and so what ends up happening is people

and so what ends up happening is people

and so what ends up happening is people just don’t remember everything that

just don’t remember everything that

just don’t remember everything that they’ve been told in fact research has

they’ve been told in fact research has

they’ve been told in fact research has shown us that people immediately forget

shown us that people immediately forget

shown us that people immediately forget 40 to 80 percent of what a doctor tells

40 to 80 percent of what a doctor tells

40 to 80 percent of what a doctor tells them and then of what’s left

them and then of what’s left

them and then of what’s left you only remember half correctly so just

you only remember half correctly so just

you only remember half correctly so just telling someone something isn’t good

telling someone something isn’t good

telling someone something isn’t good enough people have to be told in the

enough people have to be told in the

enough people have to be told in the right way and with the right tools so we

right way and with the right tools so we

right way and with the right tools so we developed a system we trained families

developed a system we trained families

developed a system we trained families while they’re in the hospital and we

while they’re in the hospital and we

while they’re in the hospital and we integrate them into the way care is

integrate them into the way care is

integrate them into the way care is provided in hospitals we start off by

provided in hospitals we start off by

provided in hospitals we start off by training nurses and those nurses run

training nurses and those nurses run

training nurses and those nurses run sessions with the families in the wards

sessions with the families in the wards

sessions with the families in the wards they do it before or after visiting

they do it before or after visiting

they do it before or after visiting hours and they focus on training the

hours and they focus on training the

hours and they focus on training the families in the skills that are going to

families in the skills that are going to

families in the skills that are going to keep people out of the hospital we found

keep people out of the hospital we found

keep people out of the hospital we found very early on that people like to be

very early on that people like to be

very early on that people like to be entertained

entertained

entertained so we developed over the top Bollywood

so we developed over the top Bollywood

so we developed over the top Bollywood style videos we’re in India after all

style videos we’re in India after all

style videos we’re in India after all and then we get families practicing the

and then we get families practicing the

and then we get families practicing the skills so instead of five minutes of

skills so instead of five minutes of

skills so instead of five minutes of someone telling you what to do you get

someone telling you what to do you get

someone telling you what to do you get hours to practice before you go home and

hours to practice before you go home and

hours to practice before you go home and that is how we get the behaviors to

that is how we get the behaviors to

that is how we get the behaviors to stick care is being delivered like this

stick care is being delivered like this

stick care is being delivered like this in 25 hospitals across India and so far

in 25 hospitals across India and so far

in 25 hospitals across India and so far we’ve reached 70,000 families

we’ve reached 70,000 families

we’ve reached 70,000 families thank you

thank you

thank you [Applause]

these are families like Aditi’s her

these are families like Aditi’s her husband had a surgery and she went

husband had a surgery and she went

husband had a surgery and she went through the training and a few months

through the training and a few months

through the training and a few months later we visited her in her village she

later we visited her in her village she

later we visited her in her village she shared with us that the training not

shared with us that the training not

shared with us that the training not only helped her it gave her the courage

only helped her it gave her the courage

only helped her it gave her the courage to provide for her husband but she also

to provide for her husband but she also

to provide for her husband but she also taught other people in her community and

taught other people in her community and

taught other people in her community and in her home the skills she wanted to

in her home the skills she wanted to

in her home the skills she wanted to make sure this didn’t happen to anyone

make sure this didn’t happen to anyone

make sure this didn’t happen to anyone else that she loved our research is

else that she loved our research is

else that she loved our research is showing the anxiety for the caregiver is

showing the anxiety for the caregiver is

showing the anxiety for the caregiver is coming down by 85% and every person we

coming down by 85% and every person we

coming down by 85% and every person we train goes on to train between one and

train goes on to train between one and

train goes on to train between one and three additional people in their

three additional people in their

three additional people in their community or their home thank you so we

community or their home thank you so we

community or their home thank you so we were happy with these results but we

were happy with these results but we

were happy with these results but we didn’t expect this we worked with a

didn’t expect this we worked with a

didn’t expect this we worked with a group of researchers at Stanford and

group of researchers at Stanford and

group of researchers at Stanford and this body of research revealed that were

this body of research revealed that were

this body of research revealed that were reducing post surgical complications by

reducing post surgical complications by

reducing post surgical complications by 71 percent 71 percent

71 percent 71 percent

71 percent 71 percent these are serious complications there

these are serious complications there

these are serious complications there are things like respiratory infections

are things like respiratory infections

are things like respiratory infections wound infections there complications

wound infections there complications

wound infections there complications that send someone back to the hospital

that send someone back to the hospital

that send someone back to the hospital or in extreme cases result in death so

or in extreme cases result in death so

or in extreme cases result in death so it works

it works

it works bringing families to the center formally

bringing families to the center formally

bringing families to the center formally integrating them into the way care is

integrating them into the way care is

integrating them into the way care is provided can radically transform

provided can radically transform

provided can radically transform healthcare it can save lives we’re on

healthcare it can save lives we’re on

healthcare it can save lives we’re on track to train a million people by the

track to train a million people by the

track to train a million people by the end of 2018 but that’s nothing we’re

end of 2018 but that’s nothing we’re

end of 2018 but that’s nothing we’re only scratching the surface chances are

only scratching the surface chances are

only scratching the surface chances are you or someone you love is going through

you or someone you love is going through

you or someone you love is going through this right now so my colleagues and I

this right now so my colleagues and I

this right now so my colleagues and I are constantly asking ourselves how can

are constantly asking ourselves how can

are constantly asking ourselves how can we make this spread how can we make this

we make this spread how can we make this

we make this spread how can we make this the new normal

the new normal

the new normal this is a simple solution to a large

this is a simple solution to a large

this is a simple solution to a large problem and better yet it’s something

problem and better yet it’s something

problem and better yet it’s something others can replicate and that’s the

others can replicate and that’s the

others can replicate and that’s the point we have the opportunity to

point we have the opportunity to

point we have the opportunity to transform health care from a cold and

transform health care from a cold and

transform health care from a cold and scary experience into something that’s

scary experience into something that’s

scary experience into something that’s full of compassion and love and we can

full of compassion and love and we can

full of compassion and love and we can do that by bringing families to the

do that by bringing families to the

do that by bringing families to the center of care

center of care

center of care my request to you is to think about the

my request to you is to think about the

my request to you is to think about the possibilities when you or I people

possibilities when you or I people

possibilities when you or I people without medical degrees work alongside

without medical degrees work alongside

without medical degrees work alongside doctors and nurses because one day I

doctors and nurses because one day I

doctors and nurses because one day I think we’re going to look back we’ll

think we’re going to look back we’ll

think we’re going to look back we’ll scratch our heads a little and we’ll

scratch our heads a little and we’ll

scratch our heads a little and we’ll wonder why not sooner thank you

wonder why not sooner thank you

wonder why not sooner thank you [Applause]