Lets pool our medical data John Wilbanks
so I have bad news I have good news and
I have a task so the bad news is that we
all get sick I get sick you get sick
right every one of us gets sick and the
question really is how sick do we get is
it something that kills us is something
that we survive is it something that we
can treat and we’ve gotten sick as long
as we’ve been people and so we’ve always
looked for reasons to explain why we get
sick and for a long time it was the gods
right the gods are angry with me or the
gods are testing me right or God
singular more recently is punishing me
or judging me and as long as you look
for explanations we’ve wound up with
something that gets closer and closer to
science which is hypotheses as to why we
get sick and as long as you’ve had I
policies about why we get sick we’ve
tried to treat it as well this is Ava’s
Sena he wrote a book over a thousand
years ago called the Canon of medicine
and the rules he laid out for testing
medicines are actually really similar to
the rules we have today that the disease
and the medicine must be the same
strength the medicine needs to be pure
and in the end we need to test it in
people and so if you put together these
themes of a narrative or a hypothesis
and human testing right you get some
beautiful results even we didn’t have
very good technologies this is a guy
named Carlos Finley he had hypothesis
that was way outside the box for his
time and they late 1800s he thought
yellow fever was not transmitted by
dirty clothing he thought it was
transmitted by mosquitoes and they
laughed at him for 20 years they called
this guy the mosquito man but he ran an
experiment in people right he had his
hypothesis and he tested in people so he
got volunteers to go move to Cuba and
live in tents and be voluntarily
infected with yellow fever so some of
the people in some of the tents had
dirty clothes and some of the people
were in tents that were full of
mosquitoes that have an exposed to
yellow fever and it definitively proved
that it wasn’t this magic dust called
fomites and your clothes that caused
yellow fever if it wasn’t until we
tested in people that we actually
and this is what those people signed up
for this is what it looked like to have
yellow fever in Cuba at that time you
suffered in a tent in the heat alone and
you probably died but people volunteered
for this and it’s not just a cool
example of a scientific design of
experiment in theory they also did this
beautiful thing they signed this
document and it’s called an informed
consent document an informed consent is
an idea that we should be very proud of
as a society right it’s something that
separates us from the Nazis at Nuremberg
and forced medical experimentation it’s
the idea that agreement to join a study
without understanding isn’t agreement
it’s something that protects us from
harm from hucksters from people that
would try to hoodwink us into a clinical
study that we don’t understand or that
we don’t agree to and so you put
together the thread of narrative
hypothesis experimentation and human and
informed consent and you get what we
call clinical study and it’s how we do
the vast majority of medical work
doesn’t really matter in the north to
south to East the West clinical studies
form the basis of how we investigate so
if we’re going to look at a new drug all
right we tested in people we draw blood
we do experiments and we gain consent
for that study to make sure that we’re
not screwing people over as part of it
but the world is changing around the
clinical study which has been fairly
well established for tens of years if
not 50 to 100 years so now we were able
to gather data about our genomes but as
we saw earlier our genomes aren’t
dispositive we’re able to gather
information about our environment and
more importantly we’re able to gather
information about our choices because it
turns out that what we think of as our
health is more like the interaction of
our bodies our genomes our choices and
our environment and the clinical methods
that we’ve got aren’t very good at
studying that because they are based on
the idea of person-to-person interaction
you interact with your doctor and you
get enrolled in the study so this is my
grandfather actually never met him but
he’s holding my mom and his genes are in
me right his choices ran through to me
he was a smoker like most people this is
my son so my grandfather’s genes go all
the way through to him
and my choices are going to affect his
health the technology between these two
pictures cannot be more different but
the methodology for clinical studies has
not radically changed over that time
period we just have better statistics
the way we gain informed consent was
formed in large part after World War Two
around the time that picture was taken
that was 70 years ago and the way we
gain informed consent this tool is
created to protect us from harm now
creates silos so the data that we
collect for prostate cancer or for
Alzheimer’s trials goes into silos where
it can only be used for prostate cancer
or for Alzheimer’s research right it
can’t be networked it can’t be
integrated it cannot be used by people
who aren’t credentialed so a physicist
can’t get access to without filing
paperwork a computer scientist can’t get
access to about filing paperwork
computer scientists aren’t patient they
don’t file paperwork this is an accident
these are tools that we created to
protect us from harm what they’re doing
is protecting us from innovation now and
that wasn’t the goal it wasn’t the point
right it’s a side effect if you will of
a power recreated to take us for good
and so if you think about it the
depressing thing is that Facebook would
never make a change to something as
important as an advertising algorithm
with a sample size as small as a phase 3
clinical trial we cannot take the
information from past trials and put
them together to form statistically
significant samples and that sucks right
so forty-five percent of men developed
cancer thirty-eight percent of women
develop cancer one in four men dies of
cancer one in five women dies of cancer
at least in the United States and three
out of the four drugs we give you if you
get cancer fail and this is personal to
me my sister is a cancer survivor my
mother-in-law is a cancer survivor
cancer sucks and when you have it you
don’t have a lot of privacy in the
hospital you’re naked the vast majority
of the time people you don’t know come
in and look at you and poke you and prod
you and when I tell cancer survivors
that this tool we created to protect
them is a
preventing their data from being used
especially when only three to four
percent of people who have cancer ever
even sign up for a clinical study their
reaction is not thank you God for
protecting my privacy it’s out range we
have this information that we can’t use
it and it’s an accident so the cost and
blood and treasure of this is enormous
226 billion a year is spent on cancer in
the United States 1,500 people a day die
in the United States and it’s getting
worse so the good news is that some
things have changed and the most
important thing that’s changed is that
we can now measure ourselves in ways
that used to be the Dominion of the
health system so a lot of people talk
about it is digital exhaust I like to
think of it as the dust that runs along
behind my kid we can reach back and grab
that dust and we can learn a lot about
health from it so if our choices are
part of our health what we eat is a
really important aspect of our health so
you can do something very simple and
basic and take a picture of your food
and enough people do that we can learn a
lot about how our food affects our
health one interesting thing that came
out of this this is an app for iPhones
called the eatery is that we think our
pizza is significantly healthier than
other people’s pizza is I
and it seems like a trivial result but
this is the sort of research that used
to take the health system years and
hundreds of thousands of dollars to
accomplish it was done in five months by
a startup company of a couple of people
I don’t have any financial interest in
it but more non trivially we can get our
genotypes done and although our
genotypes aren’t this positive they give
us clues so I could show you mine it’s
just a st CS and G’s this is the
interpretation of it as you can see i
carry a thirty-two percent risk of
prostate cancer twenty-two percent risk
of psoriasis of a 14-percent risk of
Alzheimer’s disease so that means if
you’re a geneticist you’re freaking out
going oh my god you’re told every when
you carry the apoe4 allele what’s wrong
with you all right when i got these
results i started talking to doctors and
they told me not to tell anyone of my
reaction is is that going to help anyone
cure me when i get the disease and no
one could tell me yes and i live in a
web world where when you share things
beautiful stuff happens not bad stuff so
I started putting this in my slide decks
and I got even more obnoxious I went to
my doctor I so I like tech she gave my
blood work please give me back my data
so this is my most recent bloodwork as
you can see I have high cholesterol I
have particularly high bad cholesterol
and I have some bad liver numbers but
those are because we had a dinner party
with a lot of good wine the night before
we ran the test all right but look at
how non computable this information is
this is like the photograph of my
granddad holding my mom from a data
perspective and I had to go into the
system and get it out so the thing that
I’m proposing we do here is that we
reach behind us and we grab the dust
they reach into our bodies and we grab
the genotype and the reach into the
medical system when we grab our records
and we use it to build something
together which is a comment and it’s
been a lot of talk about Commons is
right here there everywhere right a
Commons is nothing more than a public
good that we build out of private goods
we do it voluntarily we do it through
standardized legal tools we do it
through standardized technologies that’s
all the commons is it’s something that
we build together because we think it’s
important and a commons of data is
something that’s really unique because
we make it from our own data and
although a lot of people like privacy is
their methodology of control around data
sess around privacy at least some of us
really like to share as a form of
control and what’s remarkable about
digital Commons is if you don’t need a
big percentage if your sample size is
big enough to generate something massive
and beautiful so not that many
programmers write free software but we
have the Apache web server not that many
people who read Wikipedia edit but it
works so as long as some people like to
share as their form of control we can
build a Commons as long as we can get
the information out and in biology the
numbers are even better so Vanderbilt
ran a study asking people we’d like to
take your bio samples your blood and
share them in a bio bank and only five
percent of the people opted out I’m from
Tennessee it’s not the most science
positive state in the United States of
America but only five percent of people
wanted out so people like to share if
you give them the opportunity and the
choice and the reason that I got
obsessed with this besides the obvious
family aspects is that I spend a lot of
time around mathematicians and
mathematicians are drawn to places where
there’s a lot of data because they can
use it to tease signals out of noise and
those correlations they can tease out
they’re not necessarily causal agents
but math in this day and age is like a
giant set of power tools that we’re
leaving on the floor not plugged in and
health while we use hand saws if we have
a lot of shared genotypes and a lot of
shared outcomes and a lot of shared
lifestyle choices and a lot of shared
environmental information we can start
to tease out the correlations between
subtle variations and people the choices
they make and the health that they
create as a result of those choices and
is open source infrastructure to do all
of this sage by our networks is a
non-profit that’s built a giant math
system that’s waiting for data but there
isn’t any so that’s what I do I’ve
actually started what we think is the
world’s first fully digital fully self
contributed unlimited in scope global
and participation ethically approved
clinical research study where you
contribute the data so if you reach
behind yourself and you grab the dust if
you reach into your body and grab your
genome if you reach into the medical
system and somehow extract your medical
record
you can actually go through an online
informed consent process because the
donation of the comments must be
voluntary and it must be informed and
you can actually upload your information
and have its indicated to the
mathematicians who will do this sort of
big data research and the goal is to get
a hundred thousand in the first year and
a million in the first five years so
that we have a statistically significant
cohort that you can use to take smaller
sample sizes from traditional research
and map it against so you can use it to
tease out those subtle correlations
between the variations that make us
unique and the kinds of health that we
need to move forward as a society and I
spent a lot of time around other Commons
I’ve been around the early web I’ve been
around the early Creative Commons world
and there’s four things that all of
these share which is they’re all really
simple and so if you were to go to the
website and then role in this study
you’re not going to see something
complicated but it’s not simplistic
these things are weak intentionally
right because you can always add power
and control to a system but it’s very
difficult to remove those things if you
put them in at the beginning and so
being simple doesn’t mean being
simplistic and being weak doesn’t mean
weakness right those are strengths in
the system and open doesn’t mean that
there’s no money closed systems
corporations make a lot of money on the
open web and then one of the reasons why
the open web lives is that corporations
have a vested interest in the openness
of the system so all of these things are
part of this of the clinical study that
we’ve created so you can actually come
in all you have to be is 14 years old
willing to sign a contract that says I’m
not going to be a jerk basically and
you’re in you can start analyzing the
data you do have to solve a CAPTCHA as
well right
and if you’d like to build corporate
structures on top of it that’s okay too
that’s all in the consent so if you
don’t like those terms you don’t come in
and it’s very much the design principles
of a Commons that we’re trying to bring
the health data and the other thing
about these systems is that it only
takes a small number of really
unreasonable people working together to
create it didn’t take that many people
to make Wikipedia Wikipedia or to keep
it wikipedia and we’re not supposed to
be unreasonable in health and so I hate
this word patient right I don’t like
being patient when systems are broken
and healthcare is broken I’m talking
about the politics of health care i’m
talking about the way we scientifically
approach health care so i don’t want to
be patient and the task i’m giving to
you is to not be patient so I’d like you
to actually try when you go home to get
your data you’ll be shocked and offended
and I would bet outraged at how hard it
is to get it but it’s a challenge that I
hope you’ll take and maybe you’ll share
it maybe you won’t if you don’t have
anyone in your family who’s sick maybe
you wouldn’t be unreasonable but if you
do if you’ve been sick then maybe you
would and we’re going to be able to do
an experiment in the next several months
that lets us know exactly how many
unreasonable people are out there this
is the Athena Breast Health Network it’s
a study of 150,000 women in California
and they’re going to return all the data
to the participants of the study in a
computable form with one click ability
to load it into the study that I’ve put
together so we’ll know exactly how many
people are willing to be unreasonable so
what I’d end is the most beautiful thing
I’ve learned since I quit my job almost
a year ago to do this is that it really
doesn’t take very many of us to achieve
spectacular results you just have to be
willing to be unreasonable and the risk
we’re running is not the risk those 14
men who got yellow fever ran right is to
be naked digitally in public so you know
more about me and my health than I know
about you it’s asymmetric now and being
naked and alone can be terrifying but to
be naked in a group voluntarily it can
be quite beautiful and so it doesn’t
take all of us it just takes all of some
of us thank you
you