Transcriber: Robert Tucker Reviewer: Queenie Lee
When I first heard
that I had been selected to give a TED talk,
I was amazed.
(Laughter)
But once I realised what had happened, I began to get nervous.
Moi, presenting on my passion,
a plan of action, a blueprint for better eye health,
better eye health for 289 million people visually impaired worldwide,
including 39 million people who are blind,
and 280 million people whose vision condition
cannot be fully corrected using spectacles or eye surgery.
Did you know that a blueprint for a self-propelled cart
came from Leonardo da Vinci in the 15th century,
and it took more than 500 years
to make his big dream about self-driven cars come to pass,
but that it's possible now?
There are predictions that, by 2040,
Fifty percent of vehicular traffic will be self-driven.
And it's wonderful news, especially for people visually impaired,
because self-driving cars mean for them more independence and more freedom.
So, how can I stand
shoulder-to-shoulder with Leonardo da Vinci
and speak about my blueprint for the future?
Well, on one level, I can't,
not if you are going to compare us
by our creativity and scientific knowledge.
Leonardo da Vinci was one of the most creative people in all history.
But, on another level,
I feel comfortable standing next to him as a fellow human being.
As a human being who believes we all possess different talents,
and we all have the power
to help each other in changing the world for the better.
I believe that I have talents,
and I am absolutely sure that each of you has talents too.
I am here today because I would love you all to be involved in my plan.
My name is Danuta Sampson,
and I'm a scientist involved in research on eye health.
Today I'm going to speak about a blueprint for better eye health.
Unlike for Leonardo,
I'm hoping to see my blueprint realised a little sooner.
As you may pick up from my accent, I am Polish.
I was born in Poland, and so far, have spent most of my life there.
Poland is in Central Europe,
has beautiful landscapes to blend history and interesting culture and cuisine.
The Polish language has 32 letters,
a few more than in English,
but apparently is seen as a difficult language to learn,
and I'm not sure why.
My husband, David, a wonderful and very smart native English speaker,
still struggles to pronounce some Polish words.
But what is difficult in saying:
"W Szczebrzeszynie chrąszcz brzmi w trzcinie"?
Whereas, with David performing, it sounds like:
(Sound recording of her husband, David, attempting the sentence.)
So, perhaps the Polish language is difficult to learn.
However, I can't provide you
with a very scientific answer to this question
because I am not a specialist in Polish linguistics,
I am a physicist.
I obtained my PhD in biophysics
from Nicolaus Copernicus University
in Poland,
and, for the last three years,
I have continued my research in the Lions Eye Institute here in Perth.
My research focuses on developing instruments and metals
to be applied by clinicians for the study of retinal eye diseases.
Although the human eye is a very small organ,
the size of a ping-pong ball,
it has more than two million working parts
and is the second most complex organ in our body, just after the brain.
The human retina is a light-sensitive detector at the back of the eye,
and it's a very important component for our vision.
If the retina does not work properly, our vision can be impaired or lost.
Retinal vein occlusion is one of the retinal diseases
that may lead to vision loss.
It's caused by a blockage of retinal veins.
Although many advances have been made in the treatment of retinal diseases,
many challenges remain.
One of the challenges is a lack of tools
to monitor how single retinal cells change
as a disease progresses or in response to treatment.
As a result, our knowledge of how disease affects the retina
is still very limited,
and development of more effective treatment is slowed.
However, the good news is that there are many research groups in the world
working on this problem,
and they work very, very hard
because the motivation is real.
The motivation is people:
children and adults who suffer from eye disease,
and this disease not only affects their vision,
but also impacts on their well-being, communication and relationships.
Unfortunately, the ageing of the world's population
will cause a big increase in the number of people affected.
So, we have a growing number of people
who will become visually impaired one day.
We have children and adults
who often feel lonely, isolated from society.
We have a disease we don't fully understand
without the right tools to watch it.
What should we do?
I have spent quite a lot of time discussing this topic
with my local and international colleagues,
scientists and clinicians, as well as with people visually impaired.
We all agree that a blueprint for better eye health
needs to involve three aspects in parallel:
diagnosis, treatment and well-being.
And that blueprint is us,
all of us working together for better eye health,
visually impaired people, society, schools, doctors, scientists,
and decision-making bodies.
So, what is the plan?
First of all, wouldn't it be brilliant
if we all could become more empathic
towards the visually impaired.
Schools and teachers could teach children
how to form friendships with their disabled colleagues
to help address their loneliness
and equalise rights for a joyful life in the community.
There could be special activities undertaken at schools.
For example, we could design and produce special glasses
that simulate visual impairment,
give it to children with normal vision,
and ask them to play some simple games with their visually impaired colleagues.
To be able really to understand a problem,
and thereby to build up empathy for it,
is best by directly experiencing it.
Moreover, as a society,
we should create more opportunities
to actively involve visually impaired people in our communities.
We should give them more opportunities for paid jobs.
At the moment, the unemployment rate for them,
it's about sixty percent.
And visually impaired people,
they want and they need jobs as [much as] anyone else:
they want and they need to be productive members of the community.
For better eye health,
we also need to improve eye health systems
starting with making sure that doctors have the opportunity
to spend high-quality time with their patients.
A few months ago, my own father was diagnosed with retinal vein occlusion,
and his sight is likely to worsen over the coming years.
He asked the doctor, "What next?"
The doctor replied,
"Well, there are some therapies available that you have to pay for,
but now you have to go because there are other patients waiting."
My dad was left with many unanswered questions:
What does "some therapies" mean?
Are they safe?
Will my vision come back?
If we really want to understand disease and provide the best treatments,
then patients need to be involved effectively:
how my dad, a person without medical knowledge,
can decide what next,
how he can be ready to spend all of his savings to fight for his sight.
Patients need to feel the doctor cares,
and they need to have their condition and choices fully explained to them.
For better eye health, we also need to improve the scientific environment,
the place where actually all of this research is happening.
Many researchers share the view
that the pressure to obtain external funding,
and fixed-term employment contracts, often for one year at a time,
cause questionable research practices
The same pressure pushes them to spend too much of their time and energy
to advertise their discoveries too enthusiastically and too soon,
giving false hope to their patients.
I have heard so many stories from people visually impaired
that they heard on the news about a breakthrough in eye research.
They became very enthusiastic about it, perceiving hope for themselves,
which quickly turned into disappointment,
because the advertisement was far ahead of reality.
So, our blueprint seeks to replace
a competitive ecosystem with a more collaborative one.
Universities and funding bodies
need to provide the best research environment for researchers,
and they have to make sure
that they promote transparent, honest and inclusive collaboration.
Scientists should be ready
to be open, sharing their metals and data,
because, if we want to form an hypothesis about a disease,
then probably data from a few patients is enough.
However, in real clinical practice, variability in disease is so huge
that we really need to analyse data from hundreds of patients
if you want to get this big picture of the disease.
And, at the end of this process,
we need to believe in our data,
and we need to publish high-quality papers.
So, as a scientist,
I'm urging you, my colleagues,
to be more transparent, inclusive and honest in your work.
And I'm asking you, universities and funding bodies,
to give us more support.
As a daughter of a wonderful person with retinal disease,
I'm asking you doctors to spend more time with your patients,
to provide them with the full support they deserve and they need.
As a human being,
I wish that we may all become more welcoming
towards visually impaired people.
If you know that in your local communities there are people visually impaired,
visit them, offer to go out,
perhaps form a friendship in time.
I really would like to see in each visually impaired person
the same enthusiast and joyful life
as displayed by this great musician, Ray Charles.
And I hope that for you too.
Thank you.
(Applause)