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