Translator: 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)