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Morning I don't speak french so I hope
00:00:04
everything you said was like good okay
00:00:07
great and I will be giving my talking
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English today because my friend is
00:00:12
terrible my sister is even worse so I
00:00:14
hope that's okay just a quick pull
00:00:18
before we get started I'm curious how
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many people in the remote ever heard of
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patients like new right that's good.
00:00:25
That's good. Um so there's there's a
00:00:27
few people that have for a I'm also
00:00:30
curious you know how many people remote
00:00:32
console yourself a and engineering
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technologist assigned is something in
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that discipline okay so most of the
00:00:40
folks here how many people in the room
00:00:41
would you consider yourself a patient
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whatever that means okay so these them
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out but you're I think I'm gonna try to
00:00:51
focus on a few key things for the day
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maybe the most important in this is
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always a mistake is a speakers to say
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the most important thing that you can
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your talk as in the room starts paying
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attention if you are technologists or
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science as a researcher you never lose
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sight of in like he health that what
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you're trying to do is help a patient
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and you're trying to help another human
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being this is different as that's about
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Schmidt senses difference whether this
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is different than other consumer
00:01:16
platforms this is this is something
00:01:17
that very intimately can I can affect
00:01:19
people and I had the the benefit of
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almost twenty four hours a travel to
00:01:25
get your yesterday which was a lot of
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fun. And I wonder might talk that I
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sent through and my apologies of the
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translators I decided just to blow it
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up "'cause" I don't like it so I'm I'm
00:01:35
giving the the if V guys some some fun
00:01:37
today but what I really thought I could
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do that might be the difference and
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hopefully high impact probably you is
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to give you a chance to actually hear
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from real patients who members of
00:01:48
patients like me about what are they
00:01:50
get one of the use it what's the point
00:01:52
houses helping them in their wife
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because among other things I thought
00:01:56
that might be somewhat inspiring for
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some you'd understand at the end of the
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day how some of the things you might do
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in your career what somebody might be
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working on here may actually impact
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real people I think that's one of the
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most rewarding things you can do the
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person in your career so I'm just gonna
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have the German needed or maybe I can
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do this one's like board. That's okay.
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So this is one of the few slides O'shea
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today but I I like to start talks with
00:02:22
this one because this is actually from
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two thousand eight I don't the company
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for almost eight years now this this
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slide was part of our series be
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financing that way back in the day and
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we'll have some of some news on that
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front announced the next few months but
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what I think is interesting is that in
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there's a lot of sort of momentum today
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in the market about patience interested
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E putting patients first E health
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developing technologies are patients
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our organisations really been focus on
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that since its inception. Um and so
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some of these things that are kind of
00:02:54
now becoming more mainstream principles
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and the design and delivery of
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solutions for patients are things about
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proud to say have kind of part of our
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DNA since we really got started is
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organisation so what that's what meant
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is gonna have the first video player is
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a video of an actual patients we have a
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board of advisers of patients who are
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members of our platform there are also
00:03:18
people are kinda hopeless keep are are
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compass and help us know that were
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doing the right things for them I'm
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gonna show you three videos and and
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this is the first of those I mean you
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know it's it's to my daughter it's just
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something that I started to do when she
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was younger. I wanted to watch special
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what space one in the beginning you
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know how they work that they never had
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a deep mean they were Generally just
00:04:00
looking for have a good day I don't
00:04:08
stick on them yeah I'm currently living
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stage format a static I also have Zack
00:04:21
sure how and for the first time I was
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really basically I started saving and
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its composition shortly after that
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recognise that I will as I was looking
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at my this I was writing these names
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and making them very person and and was
00:04:40
taking them see yes advice likes it.
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transform the notes from something very
00:04:46
simple But it how people see something
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really care to read and not just for
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for to read "'em" button for me to
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write down and additional I I I share
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my cancer stories online. I share my
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side effects online it certainly
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doesn't help me to keep my symptoms. I
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I I feel that night so oh your patients
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my experience. So that they can build
00:05:21
their experience and help frankly help
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with their daughters all these doctors
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all these researchers in my information
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just as much as all the other three
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thousand and we're going to develop
00:05:32
intuition share my individual data is
00:05:35
probably very meaningful but when you
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take a look at all the data together
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and then there's a story then there's a
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meeting time need my data I share it
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with an organisation that can agree
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that data can put it together and see
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see and I'm not just helping that one
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page all patients this is about a
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little bit like rest of my life. I'm
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doing this not just from another
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another paper no no is your your member
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that time you were planning on the
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jungle gym oh but he looked up to you
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and say oh rescue. And you look down
00:06:15
settled over to myself either two or Uh
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so I get to more like that we'll get to
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during the talk that hopefully that
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kind of touches cute talking about six
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times not hopefully that kind of
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touches you and a little bit more
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intimate way then yeah just talking
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about data in the in the abstract. Um
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what I like to do is continue to throw
00:06:57
the challenges that the the tech guys
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and I'd like to do the the browser if I
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could I wanted to show you a little bit
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of what we've built as a company for
00:07:04
patients so you can get it get a sense
00:07:06
of what is what are we done what are we
00:07:08
trying to do by providing tools and
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capabilities for patients themselves to
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be able to put their disease in
00:07:14
contacts and explain what that means in
00:07:15
the second well we're doing that I
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guess lad that and we've been around as
00:07:29
an organisation about ten years we were
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started by two brothers to lots there
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other brother director brother to look
00:07:35
into disease. And the company was
00:07:39
originally a nonprofit and re
00:07:40
incorporated think as a for profit to
00:07:43
be in this a constant enjoy investments
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back in in two thousand six two two
00:07:48
thousand seven so let's see that so you
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can afford to do okay so most
00:08:09
interesting you can always do is a wide
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demonstration but I think that makes
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this fine right alright so we have I'll
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take it in seconds we have about five
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hundred thousand patients who are
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registered with our platform over the
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last ten years. Uh so the user makes as
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the world's smallest social network or
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the world's largest medical registry
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knowledge you guys decide what you
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think we are these are patients make
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let's scroll this is your patients that
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have shows and to be public. So
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Microsoft being in Google search or
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scraping our site just like there's
00:08:46
screaming any other website. And these
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patients have chosen to be public to
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the world. They might be at the kids
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they might not care about risks of
00:08:54
that's discrimination they want their
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story their data kind of like Garth the
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video you saw out there. It's all just
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pick take a patient and and this is a
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patient living with borderline
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personality disorder and I'll let this
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come up a second all the information in
00:09:11
the plan from today's populated by
00:09:13
patience with the exception of a few
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wearable devices likes about who's
00:09:16
talking about so we have to integration
00:09:18
so remember the side use of that it so
00:09:21
you have multiple sclerosis Newman
00:09:23
understand how your mobility is
00:09:24
impaired overtime by virtue of your
00:09:26
disease your treatments we pull your to
00:09:29
the data and and you basically see
00:09:32
alongside your existing health
00:09:34
experience with the symptoms and
00:09:35
equality like and what not just how is
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an object to censor measuring notations
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get a lot of value added that so what
00:09:44
this patient has told us about
00:09:45
themselves is that they're at twenty
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nine your you know living any any
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kingdom the primary issue in life is
00:09:52
borrowed borderline personality
00:09:53
disorder males says seven other things
00:09:55
that have occurred at some point they
00:09:56
could become more abilities they could
00:09:58
be a broken bone it could be a
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hospitalisation I'm just gonna scroll
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down and in the context of the of the
00:10:06
social network this is kinda like your
00:10:08
face before you're linked in page this
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is the page that people within this I
00:10:12
go to to learn more about you as a
00:10:15
patient. We've built a bunch of
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different types of tools and of the
00:10:18
sites allow people to express their
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experiences in means sort of the most
00:10:22
also media E thing that we do is kind
00:10:24
of like a what are fee of how are you
00:10:26
doing right now you can answer every
00:10:28
second if you wanted to know what it
00:10:30
does but you could do that you can see
00:10:32
over the course of three months though
00:10:33
that this person has probably given us
00:10:35
about a higher data points maybe more
00:10:37
so there are people out there in the
00:10:39
world that find this very useful it's a
00:10:42
kind of a self journal medical record
00:10:44
in a sense right it complements what
00:10:45
your doctor might see when you go in
00:10:47
every month or every three months this
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is what's going on with you everyday
00:10:50
and that level of detail can be very
00:10:52
powerful you can also see that we've
00:10:55
built an audio life tool for those in
00:10:57
sort of the research community you
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rhino all your life is for those who
00:11:01
don't quality like is sort of an
00:11:02
abstract concept but we kind of all
00:11:04
know what that means in terms of what
00:11:06
are you able to do the things that you
00:11:08
wanna be able to do in your life are
00:11:09
you satisfied maybe you're not well me
00:11:12
might be sick are you satisfied with
00:11:13
your current health state or how
00:11:15
satisfied are you in a sense this is
00:11:21
some functionality related to mental
00:11:23
health and it's gonna scroll down to
00:11:24
get this more interesting stuff down
00:11:26
here so looking at symptoms this
00:11:29
patient has gone in and they've told us
00:11:31
pretty frequently just how their
00:11:33
experience with their diseases
00:11:35
affecting them. So if I want to look at
00:11:37
three months of this person's life as a
00:11:39
doctor for example I can see that the
00:11:42
inability to experience I think this is
00:11:43
pleasure just cuts off on here. It's
00:11:46
probably one of the most important
00:11:47
things and having low self esteem. So
00:11:49
I'm this patient's clinician you would
00:11:52
think this would be the things that I
00:11:53
would wanna be addressing arguably
00:11:55
right these are the things of the
00:11:56
patient is really affected by what at
00:11:58
least in the US we find is often the
00:12:00
physician may go down a different line
00:12:02
of discourse they might have things
00:12:04
that they're trying to measure
00:12:05
molecular lee or diagnostic lee and we
00:12:08
never actually get to the issues of the
00:12:09
patients actually most affected by
00:12:11
which is gonna fascinating disconnect
00:12:13
we believe that a system like this
00:12:16
eventually will connect into the
00:12:18
electronic medical record it will
00:12:19
become part of the setting of care and
00:12:22
we'll get patients a stronger voice in
00:12:24
what they're experiencing indices seek
00:12:26
the kind of treatment that they're
00:12:26
looking for I'm just gonna briefly
00:12:29
scroll down. This is stations logged a
00:12:32
lot of information and I can go down to
00:12:36
look at treatment so I can see that
00:12:37
this individuals using a bill five
00:12:40
among other things which is a a
00:12:42
disorder or a tree menus for mental
00:12:43
health disorders and blessing I'll show
00:12:47
you and then oh one other thing you
00:12:50
know there's know I can change this we
00:12:53
just look at a year's worth of data. So
00:12:57
I can see this person has been
00:12:58
extremely regimented in telling us
00:13:01
about how they're doing. So I can now
00:13:03
look over a period of a year and see
00:13:06
this person is largely stable that they
00:13:08
were doing a bit worse in their social
00:13:11
dimension the quality alive. I can look
00:13:13
at their something that all G and I can
00:13:17
see that they had some serious issues
00:13:19
with persistent worrying problems
00:13:20
concentrating that really since the
00:13:22
result. And I can go even further back
00:13:24
in time I wanna see this patient's log
00:13:27
several years it. And what we're trying
00:13:28
to do is empower people is really about
00:13:31
patient empowerment is not about data
00:13:32
date is just the outcome is really
00:13:34
about empowering people to express
00:13:36
themselves to journal about their
00:13:38
experiences and their journeys with
00:13:40
disease. But doing it in a structured
00:13:42
way worse not just that and have one
00:13:44
patient idea which I'm sure you know
00:13:45
the one just a second it becomes an
00:13:47
evidence base it becomes a systematic
00:13:50
way of learning from all of us were
00:13:52
affected by elements at one point are
00:13:53
life. And making that widely available.
00:13:56
So I think with that we do one other
00:13:59
thing animal for that second video. Um
00:14:02
I want to show you what this data can
00:14:04
do when it gets aggravated. So this is
00:14:15
everyone in our web sites experiences
00:14:19
are brown oh that was the video we'll
00:14:25
get there in just a second. So this is
00:14:27
this is everyone in our website is used
00:14:30
a bill of five now if you're patient
00:14:33
and your doctor says I'm gonna put you
00:14:35
on the ball I here's how it might help
00:14:38
you know these are things that might
00:14:39
happen soon but we'll we'll just see
00:14:40
how it goes for about you know ninety
00:14:42
days or maybe you know six months. It's
00:14:45
kind of a very strange thing you think
00:14:47
about the you could probably figure out
00:14:48
what stock price of most starting up
00:14:50
for full are gonna be tomorrow can't
00:14:52
figure out what's gonna happen you
00:14:53
medically model with a very stable
00:14:55
Madison a lot of patience alternative
00:14:57
solution like this and is not just
00:14:59
patients like me it's any digital
00:15:01
solution on the web to learn from other
00:15:02
patients experience and that's what
00:15:04
this does is basically kind of like if
00:15:05
you guys are familiar with the L the
00:15:07
restaurant review company just kind of
00:15:09
like yell for patients it's a way of
00:15:12
reviewing the treatments there care
00:15:13
their symptoms and so on the patient
00:15:15
and I've been prescribed this for
00:15:17
what's a bipolar disorder. I can see
00:15:20
very quickly that a two thirds or so
00:15:23
patients find this to be moderately to
00:15:25
highly effective. So that make any
00:15:28
sense a conferencing yep it seems like
00:15:30
a good Madison for me and I can also
00:15:32
drawing and look much more carefully at
00:15:34
the different types of patients is good
00:15:35
and that outcomes and figure out to do
00:15:37
I seem like I'm gonna technician is
00:15:39
gonna do well miss Madison or not. So
00:15:42
that's what the the platform does what
00:15:44
machine other video anonymously but the
00:15:46
business and sort of the opportunities
00:15:48
and implications of doing this type of
00:15:50
thing well so we'll roll number two oh
00:15:54
but it was like to shop brown tree I
00:16:07
was ten years old. I was in school when
00:16:09
they just sitting in my classroom and I
00:16:12
felt noxious I felt like the room was
00:16:16
spinning my classmate of my teachers
00:16:18
were just kind of going about their
00:16:20
regular D and I I couldn't see anything
00:16:22
I didn't want the time that it was a
00:16:23
caesar. We went to see a neurologist
00:16:26
and a neurologist diagnosed me with
00:16:28
epilepsy. I live but epilepsy for
00:16:32
thirty one years. I experienced a range
00:16:34
of emotions having epilepsy sometimes I
00:16:37
felt frustrated sometimes I felt scared
00:16:39
sometimes I felt anxious it was
00:16:42
difficult driving and you know there
00:16:43
was a fear of having a seizure while I
00:16:45
was driving I had a really bad car
00:16:48
accident thankfully no one was fatally
00:16:51
her but after that I stopped driving it
00:16:54
got to the point where I just accepted
00:16:58
that this was going to be the rest of
00:17:00
my life. I had did some more research
00:17:02
on the pieces like website and found
00:17:05
out about an apple laptop colleges and
00:17:07
I said a lesson that I learned an apple
00:17:10
intelligence is is an apologist that
00:17:12
specialises in epilepsy that's hard to
00:17:14
diagnose and treat which is called we
00:17:17
factor we have like I mean an
00:17:19
appointment right away he said I have
00:17:21
great news for you. You are the perfect
00:17:23
candidate for epilepsy surgery by that
00:17:26
time I had done a lot of research on
00:17:28
patients like these website I look at
00:17:30
other patients that have the surgery
00:17:32
everyone that I saw on the side that
00:17:34
had a they had great outcome some of
00:17:36
them did not have seizures at all and
00:17:38
and the success rate was like maybe
00:17:40
three percent. I had the surgery on
00:17:43
August sixteenth two thousand and
00:17:44
twelve and I have been seizure free
00:17:45
ever since my life has changed
00:17:50
dramatically not worrying about having
00:17:53
a seizure I I feel like I have I've
00:17:55
just been liberated the first day that
00:17:58
I drove it was like I can't even
00:18:02
explain how excited I was how excited
00:18:04
everybody was tracking was probably the
00:18:07
best feature on the site for me being
00:18:09
able to track my treatment my my
00:18:12
medications my stress level seeing
00:18:14
every all of the different charts in
00:18:15
one place was just amazing you can go
00:18:19
on to the epilepsy community and learn
00:18:21
from other patients what has worked for
00:18:24
them what has not work for them. And
00:18:26
it's also a great support now you know
00:18:28
to know that you're not alone. So far
00:18:30
there have been to other patients that
00:18:33
I know well that her of my story. And
00:18:36
they had epilepsy surgery and they have
00:18:38
been great one person was eleven euro
00:18:41
girl that is no thirteen years old and
00:18:44
she sees three and and I'm so grateful
00:18:46
yeah no that she will not have to grow
00:18:49
up like I did she calls me based on
00:18:53
issues like this right. I mean I
00:18:57
thought to me because she talked to me
00:19:00
about how and saw the stain are now
00:19:04
going who are going to let her know
00:19:07
what is true so I I in some ways it
00:19:17
makes me feel like my journey with
00:19:19
epilepsy was for reasons and now I
00:19:21
understand why they have to go to this
00:19:23
because if I didn't go to this I would
00:19:26
have the knowledge I have now to help
00:19:28
pieces to be informed yeah advocate for
00:19:32
themselves and get the help they do
00:19:34
neat my data is going to empower them
00:19:38
expression you know that goes on the
00:19:40
site and see how my D there has
00:19:45
improved my life. And provide them with
00:19:47
some insight in how to hopefully
00:19:49
improve their lives as well. I will
00:19:52
willingly donate my data and encourage
00:19:54
people to do the same thing or who she
00:20:13
right what I do have yeah five minutes
00:20:20
alright maybe maybe seven minutes okay
00:20:24
my name is Lisa brown James display. I
00:20:28
was ten years old. I was in school one
00:20:31
day and a promise will be quick perfect
00:20:36
okay so we just heard litigious sort
00:20:38
what else wanna doom and my principal
00:20:39
job the company is developing the
00:20:43
business models and the revenue that
00:20:45
support what we do for pages which is
00:20:47
free for the patient I wanna give you
00:20:50
just a couple of examples of kinda so
00:20:52
what right there has to be an impact
00:20:54
here obviously were helping individual
00:20:56
patients pretty readily you can see the
00:20:58
one more in case they wanna get to this
00:21:00
pretty powerful to but you have to be
00:21:04
able to sustain a business out of
00:21:05
anything you do I think that was one of
00:21:07
the messages and suppression stock as
00:21:08
well. Um one of the things we mourn we
00:21:10
started working in epilepsy in two
00:21:12
thousand nine which we did in
00:21:13
partnership with the building based
00:21:14
pharmaceutical company called UCB was
00:21:17
that there is a very heavy stigma and
00:21:19
epilepsy that's people were afraid to
00:21:22
tell other people that they had
00:21:23
epilepsy at the convulsions the
00:21:25
seizures that you would have more sort
00:21:26
of very socially isolating. Um much
00:21:31
like we've also one that psoriasis can
00:21:32
be very socially isolating that there's
00:21:34
sort of a misperception in the world
00:21:35
what psoriasis it's and we were stunned
00:21:38
to learn that in our community which is
00:21:41
now about ten thousand patients strong
00:21:43
that about a third of the people there
00:21:44
but never ever met another person with
00:21:46
epilepsy which is kind of staggering
00:21:49
and there are very well documented
00:21:51
benefits of support groups and
00:21:54
connecting with other patients and
00:21:56
learning that you're not alone just in
00:21:58
terms of putting your experience in
00:21:59
context. Um we also did some work and
00:22:04
this was also supported by UCB with the
00:22:07
veteran's administration in united
00:22:08
states which is basically the the arm
00:22:11
of the health services. Um for former
00:22:16
servicemen and women in the in the US
00:22:17
military as a lot of dramatic brain
00:22:21
injuries and things of that nature have
00:22:23
come out of the call for is the
00:22:25
incidence of post a medic stress and
00:22:28
seizure disorders and things related to
00:22:30
head trauma has really escalated it's
00:22:31
become kind of a major national debate
00:22:33
in in the US and we were curious to
00:22:36
learn if patients comments or not work
00:22:38
and just use it the way that we mean
00:22:41
for them to use that engage talk to
00:22:44
other people share information doesn't
00:22:46
actually make them better in some way.
00:22:48
And we studied this in in a relatively
00:22:50
small group and it is important to know
00:22:52
this is probably true any technology
00:22:53
were technologist in the room that
00:22:55
you're gonna see a biased response and
00:22:58
the people who really really take
00:23:00
flight with your technology right the
00:23:02
people who really use it are gonna get
00:23:04
benefit the people who don't aren't.
00:23:06
But for those people who did use this.
00:23:08
They is statistically significantly
00:23:10
improve their ability to sell to manage
00:23:12
their condition into self efficacy the
00:23:14
other measuring here because basically
00:23:16
inability to advocate for yourself in
00:23:18
to seek the best care. And that's
00:23:21
incredibly powerful because this is
00:23:22
free this is just a thing that people
00:23:24
can use and if the use of the way that
00:23:25
is built in the use of the way this
00:23:27
design they can actually modify their
00:23:29
outcomes I'm gonna jump through this
00:23:34
really quickly this is another
00:23:36
condition of lupus someone if the last
00:23:38
three really quickly look this is a
00:23:40
very complicated condition is really
00:23:42
not very well understood scientifically
00:23:44
a lot of madison's that the D bile from
00:23:46
industry have attempted to develop have
00:23:48
all failed. And factors only been one
00:23:50
approved drug for lupus and fifty
00:23:52
years. And it's actually pretty mildly
00:23:54
effective it's a quite a high I meant
00:23:57
need and you can see just how
00:23:59
complicated the symptom ontology use
00:24:02
for this and this is all generated out
00:24:04
of his patience feelings about their
00:24:05
experiences we can see here what
00:24:08
patients are talking about sore these
00:24:10
cable providing a conversational
00:24:12
analytic some top of the things that
00:24:13
patients are sharing sharing saying.
00:24:16
And well the fasting things we learned
00:24:17
was that with respect to what causes
00:24:20
people to start using their Madison has
00:24:21
prescribed there's a particular side
00:24:23
effect us associated with a blank
00:24:25
present is it's called a genius which
00:24:29
is basically kinda makes you a G yes
00:24:33
for those you know but got fancy
00:24:35
worried people who experience that in
00:24:39
the black line tended to come up to
00:24:41
Madison much faster than the doctor one
00:24:43
of them so so if a doctor knows that
00:24:45
that's a risk for a patient that might
00:24:47
be something they can proactively
00:24:49
manage a say if you're experiencing
00:24:50
this let me know it might cause you'd
00:24:52
wanna start using a Madison somebody's
00:24:53
really for make you take it so we can
00:24:55
control your edging is applying know
00:24:56
that you had a genius and the last
00:25:00
thing in this whole wheat to the final
00:25:01
video. Um IPF idiot happy pulmonary
00:25:05
fibrosis is actually condition my
00:25:07
grandfather passed away from it is a
00:25:09
very terminal long disease. We're
00:25:12
basically five hours or five to grow in
00:25:15
your lungs and effectively "'cause"
00:25:16
suffocation over a period of two to
00:25:17
five years in is unknown why this
00:25:19
occurs. Um but in partnership with the
00:25:22
another farcical company peregrine all
00:25:23
time we built a community that sell the
00:25:25
largest in the world in an IPF it's a
00:25:28
the data on here's a little bit dated.
00:25:29
That's about six thousand number strong
00:25:32
probably at least half the people in
00:25:33
the community have died. But exciting
00:25:36
thing is that as a guard gonna talk
00:25:37
about their data lives on so for the
00:25:39
next patient comes in they can learn
00:25:41
from the people looking before them.
00:25:43
And the hope for that patient is that
00:25:45
they might have a better future and
00:25:46
they might otherwise had if they hadn't
00:25:48
had those experiences more things and
00:25:52
then you can getting into like what are
00:25:54
the applications of this we can begin
00:25:55
to learn how people are experiencing
00:25:57
treatments effect Riemann supposed to
00:25:59
do X and you're not seeing X happen.
00:26:02
Why right what not the letter why but
00:26:04
why is that happening we can see here
00:26:07
just looking into drugs I came into the
00:26:08
market in just learning from listening
00:26:10
to patients about you know or how did
00:26:12
your doctor talking about these
00:26:13
madison's what have your experiences
00:26:15
band we can then compare them to what
00:26:17
the FTA or the inmates off from the
00:26:20
manufacturer facilities are differences
00:26:22
between what we thought was gonna
00:26:23
happen what is actually happening those
00:26:25
can prompt for the medical studies make
00:26:27
sure the Madison is safe and effective.
00:26:29
Um I'm keeping is very high level
00:26:31
because I don't wanna totally draw you
00:26:32
guys are bore you too much but to get
00:26:35
the last video and again I think the
00:26:37
videos are important just a really
00:26:38
humanise is what we're all trying to
00:26:40
doing he health this patient Brian we
00:26:43
could look like if actually passed
00:26:44
away. So this is a kind of a the very
00:26:47
obvious of a shot before he passed but
00:26:48
it sort of it's icky message your is in
00:26:51
your your experience your data can live
00:26:53
on to help the next patient even after
00:26:55
you go and so there there is still
00:26:57
honour in sharing even when you when
00:26:59
you're gonna pass with the last one oh
00:27:04
oh Uh my name's brian. And I have you
00:27:14
pass think pulmonary fibrosis or idea
00:27:16
of my name's brian. And I have did you
00:27:28
pass think pulmonary fibrosis or IPFA
00:27:30
diseases car of the lung tissue you
00:27:33
path it means that it has no and
00:27:36
colours the major symptoms or
00:27:39
restlessness. And spasmodic coughing if
00:27:43
I go from my the the too much here in
00:27:46
the family room which is maybe forty
00:27:49
feet. I'll be out of breath the disease
00:27:53
affects people at different speeds. S
00:27:56
you have that in the back of your mind
00:27:59
and say well how long do I have you
00:28:02
know when am I going to die I found the
00:28:06
patients like me website and so out
00:28:09
there's more information here them find
00:28:11
anyplace else. It was definitely more
00:28:14
information than my positions were
00:28:15
given patients like me actually the
00:28:18
actually the scale of one to ten and
00:28:20
tells you where you are I'm in a five
00:28:22
right now some kind right the data they
00:28:27
collect is helping with research and
00:28:31
with better understanding what the
00:28:34
disease does that works. What what
00:28:37
works better for certain problems with
00:28:39
the disease. I am very willing to share
00:28:43
my medical data and I'm not shy that I
00:28:46
have really perfect pulmonary fibrosis
00:28:50
because I've been here. I give the
00:28:52
answers to people that have the disease
00:28:55
that need to live with the person we
00:28:59
just simply lets the disease yeah its
00:29:01
way and resigned themselves to
00:29:03
obliterate chair a they're not gonna
00:29:06
fare as well as someone goes to the GM
00:29:09
and pushes back against there's hope if
00:29:14
they may find something there so that I
00:29:16
can push this out longer than what they
00:29:19
expect. And this also that part of me
00:29:22
that says I'm just not yet about or or
00:29:25
or or re. so I I hope that me not
00:29:33
talking the whole time today and you
00:29:35
guys getting to hear from some real
00:29:36
people who have as some different
00:29:39
experiences. Um has been packed full my
00:29:41
hope that it shapes the rest of your
00:29:43
impressions for the rest of the day. So

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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.
424 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.
151 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.
609 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.
146 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.
111 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.
1094 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.
226 views
Synthèse et conclusion
Sébastien Mabillard, Responsable des projets E-Santé
June 3, 2016 · 4:39 p.m.

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