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A I think it's very pretty presentation
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I'm I'm not sure I understood
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everything so I hope once anything
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wrong correct if if if if I say so so
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from what I got your for profit
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company. And you're selling the data to
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intersect. Um your oh so you think or I
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don't know give sharing the data with
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universities for research are you also
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selling it to them and if so what's the
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rationale behind it So it's a great
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question is it's a criticism that we've
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received like it's not great is is not
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I know question yeah no it's it is a
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good question now we actually fact
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don't sell the patient data what we do
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is we provide tools for patients to be
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able to reflect their experiences right
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using all your life or other
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instruments and batteries. And we will
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look at that data with partners whether
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the pharmaceutical companies or in the
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US we have health plans which are sort
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of like your national health systems
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and try to help those entities
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understand from patients real world
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experiences verses what might be known
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in a clinical trial what might be seen
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impossible what's really going on. So
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it's not about selling the data just to
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be clear I think we would face a lot of
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challenges as a company if we were
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known as a company that just sells
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patient data but we do working with
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researchers both in industry and
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academia make available data that
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patients have consented to be share for
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research purposes we do a lot of work
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with like grants so if you are
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researcher who has applied for grants
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and you're trying to do something in a
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particular context or we can be helpful
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because maybe we have a patient
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population you're trying to reach or we
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have a more geographically dispersed
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set it incites that data can be made
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available to you know we try to do that
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is openly and as liberally as we can
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but provided the patients are agreeable
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to that so it's different it's a little
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different than selling the patience
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readable really trying to do today
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versus when we first thing we got
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started which was can we raise the
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patience voice to the level of medical
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evidence and we've published about
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eighty times in various literature
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journals data dining experiences that
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patients shared with us can we now
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change that to the medical evidence
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being raised the level of patient me.
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So what you're hearing from all the
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patients is videos you listen to today
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was unmet needs and challenges and
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difficulties that are doctors can solve
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for them that they're starting to the
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internet or other technologies the best
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thing we can all do is give those folks
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better tools for managing the disease
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that's we're trying to do the data
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isn't something that drives are
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business in any substantial way for
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revenue perspective but it does allow
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us to do the research that are partners
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one is to basically do that helps or
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just makes it more confusing but okay
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yes is the answer both perfect Maybe
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one question there is a lot of
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questions either means it a badge over
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what interest yes so many spectrum of
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the depression thank you Chris very
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nice presentation. Um I was always
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impressed when I saw your website on
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the patient estimate of a practical
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questions because you mentioned it in
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the beginning that you're trying to
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connect to have chronic health records
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yes. So how you go about I think about
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ninety percent of your Hoffman
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impatience to not public so if I want
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to get my patients inside some data how
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do you go about that you connect
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already and so thoughtfully that'd work
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and we don't charge for what what we're
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doing right now is so I think the the
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the the fear that we have is that
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doctor and annotation or or a patient
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on their own make some decision based
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on something they or on the internet
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and that decision hurts them. So we're
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what we're working on right now so
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going out how do we bring all of the
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patient noisy experience right I I woke
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up and I had a headache in my foot was
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tingling what does that mean. We're
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trying to figure out how to using
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analytic it's bring that data into what
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we call the setting of care where
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patients and providers interact what we
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wanna do is not fly to the doctor with
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just tremendous amounts of data I don't
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know what to do with or they get data
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updates on their cellphone at twelve
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o'clock at night because the patient
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was on because they had something what
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we wanna do is try to figure out using
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analytic so how do we raise the signal
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out of the noisy data. So that the
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provider knows exactly what to do but
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to ignore that is why we haven't
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prolific lee just flooded are data into
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the into the setting of care we wanna
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do really responsibly. So what we're
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doing right now is we have a a
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collaboration with the health system in
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Boston called partners healthcare it's
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working mass mass general hospital in a
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Farmer and a few other entities if you
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guys know those names and we're
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piloting how do we connect patient
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reported data into the medical record
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that the physicians use it has to be
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done through patient consent. So if
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patients don't want to for some reason
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if they're afraid for their data to be
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used by their doctor. Um that they just
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wanted to be their own private diary
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then we give them that right up or for
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those patients who want their data to
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flow liberally into the setting of care
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work more testing this in just one or
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two kind of small pockets if we get it
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right and it's comes a the back to some
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of the design stuff this a passion was
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talking about if you get the design
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right then you'll be able to have a
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large impact very quickly if you get
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the design wrong you roll out right
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away then you totally totally crush
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yourself. Um so our our belief is that
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we turn the control over to the patient
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we give them the option but we don't
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force them we don't mandate them. And
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if you're a position for example and
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you have a a practise of patience some
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of the stations maybe okay using this
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and letting you know what's going on
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with them others may not want to and we
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we just use to operate based on how
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each individual patient wants to do
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that. But I think in the next three
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years or so you'll see the EMR
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connectivity open up in India much more
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a scalable part of our business welcome
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okay yeah maybe the last question it's
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and I'm not sure I understood what is
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the you you said you were a non profit
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motive profit. So I I I didn't get your
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what is your business model sure so we
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were started is a nonprofit and then we
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re incorporated as a for profit several
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circling about ten years ago. Um but we
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really have that nonprofit mission
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still today as hopefully you got see
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the business models about helping
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patients understand how to take better
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control in charge over there disease
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over there care to and this is
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something that we're gonna have to
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figure out how to adapt to the european
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system because we're primarily
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operating US today. But how does a
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patient given what they're experiencing
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get the right type of care on the right
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up of outcomes for what they're looking
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for and patients upping for that this a
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subscription model a patient is free
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for patients they're not paid they're
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basically getting use of a free
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platform to help them connect other
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people into journal their experience
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the way that we make money as a company
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is we work primarily with the
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pharmaceutical industry today though
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also increasingly with pharmacies like
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walgreens united states a nose major
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insurance plan working with working
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with FDA as well on the US to help
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these entities understand what
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impatience actually care about what
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other problems I think when a company
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goes and designs a clinical trial
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believe it or not most companies so
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they don't actually go talk to patients
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disable what's it like to live with no
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static prostate cancer we're trying to
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develop a treatment for that what's it
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like living with epilepsy what your
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problems. Um we find that kind of crazy
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but I think in ten years twenty years
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that will just be the way everything is
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done right it's just it's an evolution.
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And so we're trying to help bring that
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patient voice patient experience and
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it's it's less about here the ones and
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zeros here the data bytes that we're
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gonna sell you is more about here's
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what ten thousand people are telling us
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and we can cut into that and say well
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if your treatment has this type of the
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fact these are the things that patience
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we're gonna care about and these are
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the things I could for example impact
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your trial and rolling fast or these
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are the ways you might be able to help
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patients who are receiving in at a
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centre receiving care stay complying
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with that care. Um so we're trying to
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focus the one is about driving force
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the best possible patient outcomes
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using patient education as the as the
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vehicle for that hope that helps a bit
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okay so thank you I'm sorry we all a
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little bit late so please keep your
00:08:50
question for the the break crease

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Conference Program

Ouverture de la journée e-Health 2016
Sébastien Mabillard, Coordinateur projets e-health, Fondation The Ark
June 3, 2016 · 9:08 a.m.
222 views
Mots d'introduction du Canton du Valais
Victor Fournier, Chef du service de la santé
June 3, 2016 · 9:11 a.m.
193 views
Mots d'introduction de la Fondation The Ark
François Seppey, Président de la Fondation The Ark
June 3, 2016 · 9:18 a.m.
Mots d'introduction des Instituts de la HES-SO Valais-Wallis
Laurent Sciboz , Directeur des instituts informatiques
June 3, 2016 · 9:26 a.m.
Boston Scientific - Medtech: quel business model pour l' “Internet du Patient”?
Frédéric Briguet, EU Digital Health Engagement
June 3, 2016 · 9:38 a.m.
422 views
Q&A - Boston Scientific - Medtech: quel business model pour l' “Internet du Patient”?
Frédéric Briguet, EU Digital Health Engagement
June 3, 2016 · 10:02 a.m.
150 views
Patientslikeme - The Power of We
Chris Fidyk, Vice-président et head of business development chez Patientslikeme
June 3, 2016 · 10:08 a.m.
184 views
Q&A - Patientslikeme - The Power of We
Chris Fidyk, Vice-président et head of business development chez Patientslikeme
June 3, 2016 · 10:39 a.m.
Roche Diabetes Care Inc - eHealth: the future we create today
Horst Merkle, Directeur de Diabetes Management Solutions, Roche Diabetes Care Inc
June 3, 2016 · 10:49 a.m.
230 views
Q&A - Roche Diabetes Care Inc - eHealth: the future we create today
Horst Merkle, Directeur de Diabetes Management Solutions, Roche Diabetes Care Inc
June 3, 2016 · 11:13 a.m.
Withings: du quantified self à la médecine préventive
Alexis Normand, Directeur du développement Santé chez Withings
June 3, 2016 · 11:40 a.m.
Q&A - Withings: du quantified self à la médecine préventive
Alexis Normand, Directeur du développement Santé chez Withings
June 3, 2016 · 12:04 p.m.
Groupe Mutuel - Ignilife: le coach santé au quotidien
Stéphane Andenmatten, Responsable Marketing - Membre du Management chez Groupe Mutuel
June 3, 2016 · 12:12 p.m.
608 views
Q&A - Groupe Mutuel - Ignilife: le coach santé au quotidien
Stéphane Andenmatten, Responsable Marketing - Membre du Management chez Groupe Mutuel
June 3, 2016 · 12:34 p.m.
143 views
Gérer ses données, ou être géré par ses données, quels futurs nous dessinent le big data et le quantified self ?
Stéphane Koch, Spécialiste des questions numériques
June 3, 2016 · 12:43 p.m.
303 views
Safe Host - La Suisse, le coffre-fort numérique mondial
Sylvain Bremond, Business Development Manager chez Safe Host
June 3, 2016 · 1:13 p.m.
109 views
Cipret - 7000 Romands arrêtent de fumer via facebook
Alexandre Dubuis, PhD, Responsable du CIPRET Valais
June 3, 2016 · 2:37 p.m.
Q&A - Cipret - 7000 Romands arrêtent de fumer via facebook
Alexandre Dubuis, PhD, Responsable du CIPRET Valais
June 3, 2016 · 2:49 p.m.
L.I.F.E. - express your truth through your accurate data
Dario Ossola, PhD, Algorithm R&D Coordinator, L.I.F.E. Corporation
June 3, 2016 · 2:52 p.m.
105 views
Q&A - L.I.F.E. - express your truth through your accurate data
Dario Ossola, PhD, Algorithm R&D Coordinator, L.I.F.E. Corporation
June 3, 2016 · 3:07 p.m.
ISyPeM2 - de l’individualisation des posologies aux bases de données médicales
Séverine Petitprez et Alevtina Dubovitskaya, Resp. collaboratrice scientifique, pharmacologie clinique, CHUV , et assistante de recherche, HES-SO Valais-Wallis
June 3, 2016 · 3:14 p.m.
1085 views
Q&A - ISyPeM2 - de l’individualisation des posologies aux bases de données médicales
Séverine Petitprez et Alevtina Dubovitskaya, Resp. collaboratrice scientifique, pharmacologie clinique, CHUV , et assistante de recherche, HES-SO Valais-Wallis
June 3, 2016 · 3:26 p.m.
Karmagenes - Be a game changer: meet yourself
Kyriakos Kokkoris, CEO de Karmagenes
June 3, 2016 · 3:30 p.m.
102 views
Q&A - Karmagenes - Be a game changer: meet yourself
Kyriakos Kokkoris, CEO de Karmagenes
June 3, 2016 · 3:39 p.m.
Table ronde - eDocteur et ePatients, une eRelation à créer...
Dr Jean-Gabriel Jeannot, Pierre-Mikael Legris, Dr Pietro Scalfaro, Christine Bienvenu, David-Zacharie Issom
June 3, 2016 · 3:42 p.m.
222 views
Synthèse et conclusion
Sébastien Mabillard, Responsable des projets E-Santé
June 3, 2016 · 4:39 p.m.