Future Medicine: Modern Informatics | Richard Frackowiack | TEDxYouth@Zurich
Summary
TLDRThe speaker, a retired brain doctor, emphasizes the need for a revolution in brain medicine, criticizing the stagnant approach that has persisted for over a century. He discusses the establishment of the Human Brain Project, a massive, billion-euro initiative spanning 10 years and involving 70 principal investigators across 23 countries. The project aims to leverage informatics to understand brain organization and disease mechanisms, seeking better treatments. The speaker highlights the underutilization of medical data and the importance of data integration and federation to create 'disease signatures' for more accurate diagnoses. He also addresses ethical concerns, advocating for a distributed approach to data analysis that respects privacy and empowers patients to contribute their data for medical advancement.
Takeaways
- 👨⚕️ The speaker is a retired brain doctor who is concerned about the lack of progress in brain medicine and the current methods that have remained largely unchanged for over a century.
- 🧠 There is a significant gap in understanding the brain and its diseases, with only a 30% accuracy rate in diagnosing dementia, even in renowned medical centers.
- 💡 The speaker emphasizes the need for a new approach, integrating computer science and informatics into brain medicine to improve diagnostics and treatment.
- 🌟 The Human Brain Project was initiated with a billion Euros investment, aiming to understand brain organization and disease mechanisms over a span of 10 years.
- 🏥 The project recognized the vast amount of clinical data available in hospitals, which is currently underutilized and could be a valuable resource for research.
- 🔒 Privacy and security are paramount, with strict measures in place to protect patient data, ensuring it is used ethically and responsibly.
- 🧬 The integration of clinical and research data is crucial for advancing medical knowledge, despite the challenges of data accessibility and sharing.
- 📊 The use of advanced imaging and data analysis can reveal disease signatures, allowing for more accurate diagnoses, such as identifying Alzheimer's disease with 95% accuracy.
- 🌐 The project aims to create a medical informatics platform to federate data across multiple hospitals, enhancing the understanding and treatment of brain diseases.
- 🔑 The speaker calls for a cultural shift in medicine, where doctors embrace informatics and patients advocate for the use of their data to improve medical research and treatment.
Q & A
What is the main concern expressed by the retired brain doctor in the script?
-The main concern is the outdated and ineffective methods in treating brain-related diseases, such as psychiatric disorders and dementia, which have seen little improvement over the past 150 years.
Why does the speaker believe that the integration of computers and informatics is crucial for the advancement of brain medicine?
-The speaker believes that the integration of computers and informatics is crucial because it can help analyze and utilize the vast amounts of clinical and research data that are currently underutilized, leading to better understanding, diagnosis, and treatment of brain diseases.
What is the Human Brain Project mentioned in the script, and what are its goals?
-The Human Brain Project is a large-scale scientific research initiative funded with a billion Euros over 10 years. Its goals include understanding how the brain is organized, the mechanisms underlying diseases, and finding better treatments by integrating data from various sources.
How does the speaker describe the current state of clinical data usage in hospitals?
-The speaker describes the current state of clinical data usage as inefficient, with only 5 to 8% of data being used for patient follow-ups, while the rest remains unused, except by lawyers for malpractice cases.
What is the significance of 'disease signatures' in the context of the script?
-Disease signatures refer to the patterns identified through data analysis that can help in diagnosing diseases with high accuracy. In the context of the script, they are used to diagnose Alzheimer's disease with 95% accuracy, compared to the traditional 70% accuracy of hospital clinical work-ups.
What is the speaker's vision for the future of medical diagnosis with the help of informatics?
-The speaker envisions a future where medical diagnosis is not solely based on patient interviews and examinations but also incorporates a wide range of data to create disease signatures, allowing for more accurate, data-driven diagnoses.
How does the speaker propose to address the ethical issues of privacy in medical data usage?
-The speaker proposes a strategy that avoids aggregating data in large warehouses. Instead, they suggest developing software to distribute questions to hospitals, which would then provide only the necessary information without revealing individual data, thus preserving privacy.
What is the role of the patient in the envisioned medical informatics revolution according to the speaker?
-The speaker sees the patient as a key driver of the medical informatics revolution, encouraging them to consent to the use of their data for medical research and to demand that their doctors embrace the informatics revolution.
What are the challenges faced by the Human Brain Project in terms of data usage?
-The challenges include the incomplete, unstructured, and non-standardized nature of clinical data, as well as the reluctance of pharmaceutical companies and researchers to share their data due to commercial interests or personal recognition.
How does the speaker plan to demonstrate the effectiveness of the medical informatics platform?
-The speaker plans to demonstrate the platform's effectiveness by implementing it in a network of six hospitals across different cities and then, if successful, tendering it to European companies for wider implementation in hospitals.
Outlines
🧠 The Need for a Paradigm Shift in Brain Medicine
The speaker, a retired brain doctor, expresses disappointment in the current state of brain medicine, which has seen little change in 150 years. He emphasizes the need for a new approach, particularly with the integration of computer science and informatics. The speaker highlights the lack of progress in treating psychiatric diseases and dementia, noting that even in prestigious medical centers, the cause of dementia is misunderstood 30% of the time. He introduces the Human Brain Project, a massive, billion-euro initiative spanning 10 years and involving 70 principal investigators across 23 countries, aimed at understanding brain organization and disease mechanisms to develop better treatments.
🌐 Leveraging Data and Informatics in Brain Medicine
The speaker discusses the vast amounts of clinical and research data that are currently underutilized in hospitals and pharmaceutical companies. He argues for the need to integrate and federate this data to unlock its potential for medical advancement. The speaker provides examples of how data integration can lead to disease signatures, which are patterns that can significantly improve diagnostic accuracy, such as increasing Alzheimer's diagnosis accuracy to 95%. He also stresses the importance of using these disease signatures to transform diagnostics, moving from patient interviews and exams to a more data-driven approach that incorporates a wide range of information.
🔬 Advancing Medical Understanding Through Disease Signatures
The speaker explains how disease signatures can help in understanding the progression of brain diseases like dementia and how they can provide real prognosis for patients. He discusses the importance of using computing to analyze data and identify these signatures, which can reveal different mechanisms at play in various types of dementia. The speaker also touches on the ethical considerations of data privacy and the strategy to avoid centralizing data in large warehouses, instead proposing a distributed approach where questions are sent to hospitals to retrieve necessary information without compromising individual privacy.
🏥 Implementing Medical Informatics for Future Healthcare
In the final paragraph, the speaker outlines plans to develop a medical informatics platform and create a network of hospitals to demonstrate its effectiveness. He discusses the importance of patient consent and the ethical use of data for medical research, emphasizing the need for a balance between public health and privacy rights. The speaker concludes by urging the audience to embrace the informatics revolution in medicine, advocating for a future where medical practice is enhanced by data-driven insights and technologies.
Mindmap
Keywords
💡Brain doctor
💡Psychiatric disease
💡Dementia
💡Informatics
💡Human Brain Project
💡Data integration
💡Disease signatures
💡Neuroimaging
💡Ethical issues
💡Medical informatics platform
Highlights
The speaker is a retired brain doctor and an optimist, despite being disappointed with the current state of brain medicine.
Brain medicine has remained largely unchanged for 150 years, with limited success in treating psychiatric diseases and dementia.
The speaker emphasizes the need for a new approach to medicine, particularly in the field of brain health.
The Human Brain Project was initiated with a billion Euros, aiming to understand brain organization and disease mechanisms over 10 years.
The project involves 70 principal investigators, multiple institutions, and participation from 23 countries.
A significant challenge is the underutilization of clinical data due to privacy concerns and lack of standardization.
The speaker calls for a change in the medical community's approach to data sharing and integration.
The potential of using advanced imaging techniques to understand brain function and disease is discussed.
The integration of clinical and research data can lead to the discovery of disease signatures, improving diagnostic accuracy.
The speaker highlights a 95% accuracy rate in diagnosing Alzheimer's disease using integrated data, compared to 70% in hospitals.
The concept of disease signatures is introduced as a way to visualize data and test hypotheses about diseases.
The importance of moving from molecular genetics to understanding higher cognitive functions is emphasized.
The speaker discusses the ethical issues of privacy and the strategy to avoid centralizing data in large warehouses.
A new software approach is proposed to distribute questions to hospitals and collect only necessary information.
The potential for patients to drive the informatics revolution in medicine is highlighted.
The speaker calls for a balance between the rights to public health and privacy when using medical data.
The development of a medical informatics platform is underway to demonstrate the effectiveness of the new approach.
The speaker concludes by urging the medical community and patients to embrace the informatics revolution for better healthcare.
Transcripts
[Music]
I'm a brain doctor or at least um I'm a
retired brain doctor and uh I'm a
disappointed person but as as you can
see from my socks I'm a I'm an
optimist and so as I was coming up to
retirement about 5 years before it in
fact I thought we got to change
things the medicine I'm talking about is
Medicine of the
brain
it's something that we do in the same
way we've always
done and we've been doing it for 150
years and we're still not very good at
it when it comes to the brain I mean you
all know people who are usually Young
Who suffer from psychiatric
disease usually for many years never
cured many of you now will know parents
grandparents who are losing their minds
dementing and then those last terrible
years where everyone has to look after
them or put them into a home or
whatever we're 30% wrong with the cause
of the dementia 30% even in you know
Mass General London Paris Lozan you know
the great centers of
Neurology so we've got to do something
about this and as we were thinking about
this a couple of mates and myself a
computer scientist a new scientist and
me a clinical scientist we thought that
the real thing that's
missing is the impact of computers and
informatics on
medicine in fact you the patients have
been much better at this than we the
doctors I mean you come in usually with
a pile of things like this off the
internet about your disease and then we
suddenly find ourselves being a bit
silly because we are not as up to date
as you
are so we set up this human brain
project a billion Euros 10 years 70
principal
investigators lots of Institutions 23
countries 10 years to try and understand
how the brain is
organized and to understand what disease
does to it what are the mechanisms
underlying disease how can we find
better
treatments so this is reasonably
big and the first thing we had to do was
find out what resources do we
have and then we thought to ourselves
which clicker are we going to use hey it
worked so the resources that we have are
data every hospital has Banks of data
about its patients for at least 10
years
secure uncorruptible
guarded against people looking into your
private
lives in fact unused you only use 5 to
8% of those data for followup patients
the rest is used by lawyers to attack
doctors who have done Mal practice and
think of the money that's used to build
data warehouses think of the energy
that's
used think of the lack of use and what
immense wealth of knowledge and real
wealth
has been just
LIF and it's your wealth because we in
Europe have socialized Health Systems
largely that means you the taxpayers are
paying for that and you're getting
nothing
back so on the medical side we said to
ourselves we need to solve this problem
we need to solve this problem with our
clinical data which there are vast
amounts in
Europe but clinical data which are not
complete not very structured not very
standardized a bit dirty with all this
protection around
them and also research data now this
comes from places like pharmaceutical
companies which hide them for commercial
reasons but if you go to the
pharmaceutical company and say how many
of your trials drug trials succeed and
they say oh we're lucky if they 5% 10%
succeed give us the data from the ones
that don't oh they hand it to
you you just need to think about it if
you go to researchers they say oh that's
my data I'm going to win my Nobel Prize
you say well hang on a moment it's not
the data that wins the Nobel Prize it's
your brain and your brain is clearly not
up to it if you're hiding your data
because you need to share it you need to
find more of it you need to get it all
together integrate it Federate it
integrate it try and do something with
it with the ideas you have not with
hiding data with passwords which you
forget and then corrupt and things like
that so so that's what we're going to
use and in fact not only are we going to
use it we're going to use it to good
effect and here's are just some examples
I got three images here people think of
images like X-rays and you look at them
you make a diagnos actually images are
like
encyclopedias look at the image up there
on the left you saw a brain which was
moving around now you're seeing the
fibers between different parts of the
brain this is one brain that's been
looked in multiple Dimensions 100,000
little picture elements you could Click
on each one of those picture elements
and potentially get all the world's
literature about what happens there what
goes wrong there what diseases affect
this place why aren't we doing that
we're doing it in
meteorology so that you could get out
your iPhone and see if it's going to
rain without looking out the
window you they do it in Aeronautics in
building
aircraft they do it in astronomy to
discover How the Universe expanded but
in medicine
trivial take up on the right there you
see a lovely little picture of nerve
cells in the rat brain each nerve cell
carries a function and at the bottom you
see a really nice movie because this one
tells you in picture form how a rat
brain evolves into a human brain over
many many many
Millennia so pictures are there because
they Federate data they integrate it and
they convey information look at this we
we we got a lot of information from
researchers in France and then from a
big website in the States called the
Alzheimer's disease neuroimaging
initiative they just put their data on
the web and said the scientist use them
and we have used them and we found lots
of different bits of
data we found clinical data we found
scans we found proteins we found gen
they gave us all this stuff and we found
a way of integrating them together and
seeing whether they form
patterns and what you see here in blue
dots are patterns of different types of
normal people between the ages of 50 and
90 and in pink you see patterns of
different types of
dementia you might think well why
different types of normal people well
the brain is an extraordinary thing you
have to lose a lot of brain to lose a
cognitive function in Parkinson's
disease you have to lose 70% of a
particular set of brains to start
beginning to show a bit of a tremble
there's that sort of Reserve in
there and with Alzheimer's disease for
example you can see postmortem brains
which have got quite a lot of
Alzheimer's disease in it already but
the people think and act and behave
normally so there's compensation so
firstly you would imagine there would be
normal AED people without any
Alzheimer's and normal AED people who
have compensated our times and we're
beginning to find them and the little
black dots around them are different
types of genes and then there's another
color of dot around the yellow ones
which are different patterns of loss of
brain which you see on scans and it's
the computer that has pulled out of all
the data which we've Federated first
then integrated these different
patterns and in fact we can diagnose
Alzheimer's disease Now with an accuracy
of 95 % as compared to a full clinical
work up in a hospital of only
70%
so these patterns are the important
things we call them disease signatures
and with these disease signatures we
want
to completely transform our diagnostic
catalogs diagnosis should not just be
based on what the patient said and what
you found when examp but should be based
on all the other information as well so
this is bringing in biology to the art
of medicine in order to create disease
signatures to allow us to visualize the
data to allow us to test hypothesis to
see whether something we think about the
disease is correct or not using vast
amounts of data at the moment in the
medical literature the big issues are we
can't reproduce our results
why not because we have small little
groups of
patients but every hospital has small
little groups of patients put them all
together and then you really get the big
picture that's the idea behind it
all so what we want to do is to move
from down
here from the little molecules of DNA
which make up our genes through the
proteins to the cells to the way they
link up
working out the rules which tell us how
these things are structured and how they
limit the way the next level can be
structured all the way up to cognition
and love and memory and feeling and
seeing and talking and understanding so
that when we're faced with patients who
have abnormalities of these things we
know which areas of the brain we should
be targeting where we should focus our
inquiry how we can work out what sort of
prognosis people with a particular
disease signature
had
so this sort of investigation and
examination of data about for example
dementias allows us to put the different
disease signatures together they're the
little pink
balls and you could see that some of
these pink balls appear to be related to
other pink balls around
them through the data that we've been
able to acquire others form like little
satellites all on their own they clearly
have a different
mechanism and we can't just tell that by
ordinary doctr we've got to use
Computing and just to really Hammer the
point
home we also have some proof that these
different disease signatures mean
something because some of them tell you
that you're going to lose your mind the
blue line over a course of about eight
years those are months at the bottom
whereas if you have a different pattern
then you don't lose your mind in the
same way or you lose it much more
slowly so this is real prognosis and
this is also prognosis of subgroups so
that when you apply your treatments you
know whether you're really having effect
or not having an effect now of course
these sorts of
things worry people because many people
still think of their doctor as part
nurse part person who has good taste and
uh
therefore puts good Furniture into their
waiting room and runs a good appointment
system so you got to you got to get away
from that you've got to move forward to
someone who's more technically minded
who who also has a human aspect there no
reason why should or she should lose
that but may have colleagues who might
be doing that side of things but there's
got to be a group of doctors who are in
there trying to find out what is
happening in the brain when it ages
when it goes mad when it becomes
demented and we're facing issues in this
program most of which we've now sorted
out the main issues are the ethical
issues of privacy so our strategy is not
to put data together in big warehouses
and use up all the energy that that
requires and all the space that requires
and all the people to run that that
requires
we've developed a new sort of software
we're going to put at each hospital so
that we would
distribute our questions to all the
hospitals rather like you do when you're
on your computer in your Google so that
our questions will go out and look for
the information they require in the
hospitals and the hospitals will remain
the same and will remain Proprietors of
their data and then we will bring back
just that information so we'll never
bring back any information about an
individual to give us the
answers now if that gives us the sorts
of insights we're now getting you as a
patient will go to your doctor you say
can you please use that information
these guys are sorting out to see
whether you're right to see whether
there might be other things that could
help
me make your doctor embrace the
informatics Revolution make medicine
embrace the infatic resolu uh Revolution
because if we don't have that then we
will remain roughly in the state we are
and the tsunami of dementia and of Psych
psychatric disease in the young with all
the suicides and even murders that come
from
that
untouched that will be our
responsibility the other thing is issues
of consent and ethics and so on most
people like you like me are really quite
happy about the fact there are ethics
committees out there that have been
really very good at managing research
done as it currently is done where you
use a lot of data about
individuals so in all the sociological
surveys when people say who do you trust
in the population doctors are always
first it's a bit silly really but
doctors are always first so the
population doctors have a special
relationship if we can build on that
build on the value and credibility of
the science you patients will be driving
the Revolution and you really really
need to do that you need to say to
someone who when you go to a hospital or
go to doctor surgery says can I use
these data for research purposes you
need to be comfortable to say yes of
course as long as it's for medicine and
not for nuclear
war right you need to be able to say
that it's your data after all you paid
for it but it's also a little bit my
data because I also paid for it through
my taxes and public health is one of our
rights privacy is another right
we have to balance our rights and at
some stage we have to be very careful
how we do that balancing but balance we
must and choose we must we have the
technology now to do all this we've put
it together into something called the
medical informatics platform we're going
to now develop it over the next two
years so that we can make a network of
six hospitals in Tel Aviv in lisan in
Paris in friborg in in Germany uh
potentially in London
and in
Milan we're going to show that it works
and then we're going to put it out to
Tender and get some European company to
start putting it into our hospitals and
start raising the game thank you very
much for
listening
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