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Digital Needs, fears and possible solutions in rheumatology - From a patients' perspective
Janos G. Kozma
Friday, Feb. 1, 2019 · 10:28 a.m. · 17m 03s
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much mister a few k. um i am a first of all uh i think you uh very much uh
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and to be here among you and the effectively i'm very passionate to buy like
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i. t. but um i have also uh the uh disease which is the
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a remote to read our treaties uh so um
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uh are we speak about myself so uh i am in g. year
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i. t. engine your academic uh that receives federal institute of technology
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and uh i i started my carrier at a. b. m.
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um i've worked proximity for years for i. b.
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m. i i went also a working to idea um
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uh rochester laboratory where i i brought to book
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oh well uh then uh i want also a marketing
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consultants a lot at i. b. m. europe so
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i like marketing and technology and uh then uh i
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yes it then i continued my car as i.
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b. m. partner i opened the company that i manage a eighteen years i have solved the it
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and the from ten years now i i am exclusive exclusively devoting my uh
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all my energy for mobile applications um what to say you
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regarding the the um my uh my my disease
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uh it started in nineteen two thousand six yes two
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thousand six it was a very painful period
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uh first of all uh we we don't know what's happened to us
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it started by a little you know information on the knees
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and after a very very quickly you to propagate sit in all the the articulation is
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uh at a such a high level that i even couldn't uh uh
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get out of the bed it was in two thousand that
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it started in two thousand a five but the that the
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maximum of reached at a two one three to sixty
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a two hundred six in february foresaw in free moms
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it was a very very pain for uh and
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uh the treatment doesn't start it immediately because
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uh you know uh i mean these kind of to crunch is going very deep
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uh so uh it was the first cost cost
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equate cost to cory it injections et cetera
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a a and sometimes the the pains uh i like very
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much uh you know to watch which is the text
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and uh that's totally true for example the the night was
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a nightmare it was so painful in the in my hand et cetera
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and um so uh we started we started to d. um
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uh the medication the maybe six the the the correct
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one six month after which was the metrics that
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and the metrics that was very painful also or regarding the side effects
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because uh you in this euro uh we doesn't start immediately
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by a metal object we started by the the peels
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so uh the pills were very painful for the storm knocks at that age et cetera
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it it was very painful then uh but but eat a stubby lies my life
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uh because uh i couldn't make sports et cetera so that was
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fine because the uh i know that we can all weekend
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wore down now because i i got the injection uh friday so
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i know that forty eight hours after it was uh
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finish my weekend was pretty bad and the after we
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uh i had the the chance uh to to change my
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my treatment uh well i don't mention the ties
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so of course but i have the the really the
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the change to the chance to change my treatment
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just a two months ago wanted to know i am a on a busy i see and and bread it's
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uh and the the so it has a really changed
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my life because there is now no side effects
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i got a very uh the uh uh a regular e. d. injection
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because there is no side effects and a very very uh
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yeah but and uh if you cast um it's very very good
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so now all i make a lot of sports et cetera so now if i come back on
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the on the team of the the this subject uh i think that the computer can yeah
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help a lot uh for people uh uh
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e. e. if our we talk to you about my feeling today and the the the very
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far future because a quantum computers are coming and
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the quantum computers are very the foundations
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of the new generation of computer which will allow us to to to make
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tremendous thinks so are we not spoke directly from can contain computer but
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i would just give you some examples or what is the power
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and i will not go deeply into the technology but what is the power of these computers and
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for why we we use them and i think we
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we have to include this in our mind
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uh because uh they will come soon and we have a lot of work to do now
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to go into that direction so it's not so future i just ask you
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before we going into the the computer techniques so it's so only
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stock and the patient apart outcome so using in at what you do
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this would would that affect your life or would that remember you
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uh after this season do you prefer not to think about it is this something that
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this this is monitoring you you you would do our or i don't know
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no ought to take regarding my disease uh oh what what to interest me
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for the happy it's all the the upper into the heart of
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a fall a you know a a four to monitoring
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and uh i didn't find it too much uh application today which help me to manage
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uh my uh my battery to use but uh i think globally it today
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uh maybe the technology is a major and off
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uh to help patients to to get some
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information into the genesis of that was my first concern i think for the people who
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what's the uh i i think if you see the whole you know a
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map and uh the the evolution of from the start to the end
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of the does the z. o. and if they reason and uh i think
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the critical period and where i can really help is the first
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what happens to me first because i i didn't know everything about uh actually takes
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nothing i was a very help the uh i make a lot of
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sports and certainly uh oh i have an aunt for immediately so i think
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we're a up who to really bring us uh you know uh
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uh help his uh into the first phase is blackness is how what i have
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how can i managed jeez what will be the disease
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uh uh uh the impact of the disease on my have
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uh and on my whole life finally on my whole life
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and how why create whole i you we'll manage this
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and i think there is several topic on that uh nutrition sports
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uh like inter major rehab medications because uh as i have hundreds to
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the ten years twelve years ago we don't start immediately uh uh
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uh i'm a a deep you know medication it's uh just a
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lot of analogies to know what's happening and it or does
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and seven ten teen answered tainting t.'s where my my uh i could
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be a manage i think and could be uh brought a have
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could be brought like that then there is the second phase you have
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your medication and what is interesting is a nap could be
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which uh money tours and help you to see the evolution
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of the disease huh you have stubble lights but uh you never
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stop allies in fact if you have highs lows i close
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that's the second is that's the second phase is how
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do you uh manage the evolution of the disease
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and then you have the the after is the the impact but after uh after uh i think
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that's much more nutritional because if i see now my case with this new uh medication
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i am not very worry about this maybe a nap which remembers me because
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i forget sometimes to take or h. friday these uh you know
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injection maybe teach manage d.'s and the
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uh that that c. d. after so that is prepared and free up switch good
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if if you as a programmer if you will have to produce this ad
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the perfect at how how what what is important about would be important for you also as a page
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uh oh no that's a good question ah i think first uh you know
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uh when we we get today this disease and we know much
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more what's we have a it's a it's a really a shock for
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me it was a shock which changes all my life on that's
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and this and that i i think uh a nap uh if i could do is
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uh that diagnoses a a better contact wheat uh uh we to the doctors
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you know there is some example are present it i think it's a good think uh what would this be good
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to have a easy access to to the doctor to yes
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yes definitively and not the physical but uh the
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uh but we can do that today yeah it's just i think
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true true or or something like that to make maybe a
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cove cole's uh instead of going to make a point and
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and to use all this technology to to access the
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you know the degree of interaction with the people this is just you because
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you're very tack f. a. f. a. no more ah i don't
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maybe well uh uh yes maybe you maybe uh yes i um i
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know i i would also like this that i am not very
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you know comfortable with this technology i uh i we profess say that i am
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comfortable with this technology and to go in that direction
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yeah and if we if artificial intelligence is there
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that tells you how you know enough of this treatment a change
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would you do it or or uh you know while not yet
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no not yet um you know i i know what compute
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uh you know what can what can they do uh
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whole five can the you know i i think uh as you have a a
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correctly say idea in the presentation doctors uh are i really really uh
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a a foundation of all the things uh so uh i
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think a you should see um i should see the
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artificial intelligence uh like a you know a very very uh um
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uh uh support a very uh yes a tremendous reports for the future
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um and i'm i'm a i think a doctor
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uh are human and you can also
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spoke about your human conditions would that you can not a spoke like this uh
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but you know i use a everyday c. re uh to take
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appointment to launch a cola to et cetera et cetera
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and the uh some tools in some system label helps a
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it's a very very uh make a very interesting yeah
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so where we were i think good i think uh do you have a question willing i
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would be important for you to record things in
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between the two later reported into position
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excuse me would would be important for you to be able use to
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an electronic device to record t. v.s related links in between
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your regular position contacts and to bring with you yes
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i i think it definitively it's a very very
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important topic uh and i think today and for
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the future artificial intelligence it's not the show
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uh today we are at the uh what we call narrow intelligence
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artificial and i thinking maybe twenty years or even more
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we we'll uh the at the very a wide uh
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uh and a super intelligence uh artificial intelligence
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and i think the the challenge is not the the only very it's
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it's not the computer today you you have for example even on
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your life on the last i for which is the art a eleven
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you have a neural processor which is able to handle manage
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six hundred b. he owns operations per second it's amazing um so
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the the real challenge for me is that that ah
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is really the data uh data huh huh connection yes
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the data collection these computers can add to it
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you have no artificial intelligence if you have note if you don't have data to a nice
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so i think the the real challenge and particularly maybe in
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medical we see y'all do a fourth of a poll
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to collect data to make we to the university some
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of very far analyses for their watch we to
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a university easily clean except the their data collection is that a
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real real real issue and i i think uh it
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takes so long ago so because it's regulated by the low
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so uh if we want to to have i think
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a very very back rate and reliable artificial intelligence
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uh we have to start today to
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think about how we get the tile what are the regulations what can we do
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how can we share these data because today there is a lot of uh you know uh
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of walls and that that we need to to destroy and this and not to dick technological war it's a
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only a jury d. quarter a cruel to roll war
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for people how to white share my data
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look all the the problem that we have even we to face book
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which is a public anybody can go and look at all the
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problem with the data and the two day this will be the
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real challenge the data okay i mean that's an excellent um
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um it's a summary um and and uh is in line with what we see as well
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yeah the thank you very much for your ideas adding value that wasn't very helpful thank you and
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hi
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so i think the important you may sit here is when you developing stopping or
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you using something don't always never ever forget that there's a patient be hired
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every is a hot feeling with pain ways they today uh where is it
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always have to keep that in mind when developing something if we do
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sell 'em transition that to the next stocks i have the pleasure to welcome jakob allow for the trash
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and uh it will uh talk about the the generic so go even deeper in what the disease
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ed or for the protection it therapy by uh i. e. so whether that we
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