James Hamblin: I want to get things started by
asking you, Mr. President to kick things off.
You've been talking about precision medicine since 2005
but a lot of us are still new to it.
So could you fill us in on the background
and what brings us here today?
The President: Well, this is
an incredibly exciting time
in medicine generally and
the biological sciences.
And a lot of this traces
back to the incredible
progress that we've made
with the human genome --
oops, I'm sorry, my mic --
I've got to talk with a mic
-- we've made less progress
when it comes
to the audio sciences.
(laughter)
Let me start again.
This is an extraordinarily
exciting time for medicine
and the biological sciences,
and a lot of this traces
back to the work that was
done in mapping out the
human genome, which was
an enormous endeavor.
There are some people
here in the room who were
involved in that process,
including our own head of
the NIH, Francis Collins.
And at the time, it was
enormously expensive
for us to do that.
With the advance of
computers, big data,
we are now seeing a rapid
acceleration in making
that process cheaper.
It is spurring on a whole
new set of understandings
about how diseases operate
and how the human body --
how cells operate, how areas
like cancer show that each
cancer may be unique, even
if it's in the same organ.
And so all these insights
promise the possibility of
us being able to cure
diseases that, up until now,
we couldn't figure out.
We could oftentimes, with
real blunt instruments,
treat, but it was
very ineffective or,
in some cases at
least, inefficient.
And what we're now seeing
is the possibility of us
identifying diseases,
targeting them,
individualizing treatments
for a particular patient,
and operating with the kind
of precision that promises
to reduce costs, provide
much better care,
make our entire health care
system much more effective.
And the key to all this is
for us to be able
to build up databases.
And because all of us
potentially could have
electronic medical records
that voluntarily -- with
strong privacy protections
-- we pool together so that
researchers, practitioners,
scientists can share,
we may be able to accelerate
the process of discovering
cures in ways that we've
never seen before.
And our Precision Medicine
Initiative has been designed
to get all these various
building blocks brought
together so that the whole
is greater than the sum
of its parts.
So that, for example, the VA
-- which has been gathering
genomic data on a large
number of our men and women
who have served this country
in order to serve them
better within the VA system
-- can make them connect
with researchers at a
particular university who
are focused on a
particular disease,
and can we use big data to
accelerate the research
process much more rapidly.
Those kinds of
opportunities are there.
And the good news is, is
that over the course of the
last year that we made this
announcement about PMI,
or Precision
Medicine Initiative,
what we've seen is huge
interest from the private
sector, from the
public sector,
from the
non-for-profit sector,
from the medical community,
from researchers.
And today, what we're able
to announce is that 40 more
organizations -- a
large number of other
organizations are joining
us in this process.
There are a whole new set of
initiatives that are going
to help to drive
this even faster.
And my hope is that this
becomes the foundation,
the architecture whereby 10
years from now we can look
back and say that we have
revolutionized medicine in
areas like cancer,
or Alzheimer's,
or some of the diseases
that cause so much pain and
suffering for so many
families
all across the country.
And there's no better place
to do it than the United
States of America, where
innovation and R&D has been
the hallmark of driving not
only our economy but the
improvements that we've seen
in the life expectancy and
the quality of life for
people all around the world.
(applause)
Dr. Hamblin: I want to
start by talking about some
successes we've had from
people on the panel in the
realm of precision medicine,
and then go to some of the
challenges that we face
moving forward -- starting
with Sonia.
So several years ago, your
mother was diagnosed with a
rare prion disease
and passed away.
The disease is known as
Fatal Familial Insomnia.
You have essentially devoted
your life to making that
name obsolete.
You chose to get tested
yourself for the gene.
How have you been motivated
to be so proactive?
Dr. Vallabh: It's
a great question.
I would say deciding to get
tested once I learned that
my mom had died of a genetic
disease and that I had a
50-50 risk of inheriting
the same thing -- which was
mid-life onset, very rapid
degenerative decline,
these diseases
are always fatal,
they are currently
untreatable -- once I had
that knowledge in my hand,
--these decisions were all
made hand-in-hand
with my husband, Eric,
who's here today --
through the two of us,
the decision to pursue
testing and resolve
that was clear.
We made that decision
instantaneously.
Because we knew there was no
going back to a time before
we knew about our risk.
So we wanted to know
what we were up against.
What I couldn't have
predicted is what
would happen next.
So, as you mentioned, I'd
been trained as a lawyer;
Eric had been trained as a
city planner and engineer.
And I don't think either of
us went into this test with
a vision of how it was going
to change our lives one way
or the other.
But when we came out with
that positive test report,
my life broke
into two pieces.
There was before,
and there was after.
And what happened after is
we set about trying to learn
everything we could
about these diseases.
And like everyone
looking for answers,
we started with Google.
We started with Wikipedia.
We read what we could
find on the Internet.
We read papers.
We called up researchers out
of the blue -- some of them
were kind enough
to take our calls.
We started attending
conferences.
We started blogging.
And eventually,
we changed jobs.
And four years later,
we're both Ph.D.
students at Harvard
Medical School.
And day to day, we work
side-by-side in Schrieber
lab at the Broad
Institute in Cambridge.
And there we're devoting
ourselves to developing
treatments for
these diseases.
I'm so proud to
be doing this.
But I have to say we've
been just immensely lucky.
The Broad Institute has
basically adopted us.
We have had some brilliant
people take risks on us,
like Eric Lander who advises
the President on science --
sometimes advises us, too.
(laughter)
Amazingly.
Amazingly.
But even with the best
people backing us,
there is no guarantee that
we will be successful
in my lifetime.
We are running this
race day by day,
and we still have to
see where it takes us.
I would say in terms of
redefining the disease as
you mentioned -- the
diagnosis that was handed to
me was fatal familial
insomnia and that's like
this particular genetic
variant in the prion protein
gene has acquired that
clinical designation over
the years.
So that name was given to
it in a time when we didn't
know what was at the
root of these diseases.
What we knew was what
doctors saw in the clinic so
some genetic prion diseases
were named for symptoms like
insomnia that some patients
have honestly and some don't.
And some genetic prion
diseases were named for the
doctors who observed
these symptoms.
But I think it's really --
it's symbolic of the era
that we're in now that I
think we can -- we can
rename these diseases on
the basis of what they are.
So now we know the molecular
mechanism of our disease.
This is like our
greatest weapon.
Like we're coming in
knowing what our enemy is.
We have molecular resolution
on our target and I think we
do ourselves a disservice
by clinging to names that
obscure the mechanism of
these diseases and the
things that unite patients
with quote unquote
"different" diseases that
have flown under different
names for many decades.
So, I think of us as
patients with genetic prion
disease and I think that is
the patient cohort that I
identify with and those are
the people who I want to help.
James Hamblin: So at once,
while you're studying a
disease that effects 100
people worldwide you're also
studying this entire
mechanism that can tie into
many diseases as people
continue to share their data
and their experience?
Sonia Vallabh: Absolutely.
The President: I know that
you're supposed to go next
but I'm going to hijack
this just for one second.
(laughter)
We're in my house.
(laughter and applause)
But there's something that I
should have mentioned that
Sonia's story I think
highlights, and that is,
so often what we label as
a health care system is
actually more of a
disease-care system in which
the patient is passive, you
wait until you get sick,
a bunch of experts
then help you solve it.
And one of the promises of
precision medicine is not
just identifying -- or
giving researchers and
medical practitioners
tools to help cure people;
it is also empowering
individuals to monitor and
take a more active role
in their own health.
Now, in Sonia's
case, obviously,
there's a very particular
genetic variant that she's
got to worry about.
And the extraordinary
strength and tenacity that
she brings to this makes me
really optimistic that she's
going to help drive for a
cure in this particular area.
But for many people who
may not have such a clear,
specific concern, may still
have genetic variants that
alter how you think about
your blood pressure,
your likelihood
for diabetes,
a whole range of potential
markers that if we get this
right, if we do
precision medicine well,
and we get that information,
that data to consumers,
gives them the ability
to stay healthy
for long periods of time.
And that's hugely promising.
And it's good for
those individuals;
it's good for
society, generally,
because it will save on a
whole lot of health care
costs if we can prevent
diseases from manifesting
themselves in
the first place.
Sorry to interrupt.
(laughter)
But it's an important point.
James Hamblin: It's a
perfect segue to Howard who
is working not just
as a patient advocate.
Your own daughter was
diagnosed with Type 1
diabetes but in terms of
data sharing you have worked
to create a platform for
data sharing and you
recently built, for your
daughter, a pancreas.
Which is especially
impressive for someone with
no training in the
medical sciences.
(laughter)
How did you manage that?
(laughter)
Howard Look: No
training required.
(laughter)
It turns out I'm a geek dad
and when my daughter was
diagnosed in 2011 the first
thing I realized was, "Wow,
here are these medical
devices -- a continuous
glucose monitor that
measures her blood glucose
every five minutes, and
insulin pump that delivers a
deadly hormone which you
walk this tight rope when
you have Type 1 diabetes
of just a little too much
insulin and you can have a
seizure or go into a coma.
Or even one in twenty people
unfortunately will die over
the course of their lifetime
from nocturnal hypoglycemia
or too much insulin
while they sleep.
And what I realized was we
just couldn't get the data
out of the devices
easily enough.
Each device came with its
own proprietary software and
it was just too hard
to get the data out.
It's kind of like imagine
you bought a digital camera
and you had to use the
software that came with the
camera in order to view
your pictures, right?
James Hamblin: I
would never see them.
Howard Look: It
was like that.
Right.
And, so we founded a company
called Tide pool which is
open source and non-profit.
And a bunch of other people
also built open source efforts.
There was a gentleman named
John Costik who reverse
engineered that continuous
glucose monitor so that we
could read data
off that device.
And another gentleman named
Ben West who reversed
engineered the insulin pump.
And there are other people.
Dana Lewis is here with her
artificial -- her open APS
-- Artificial
Pancreas System.
And this community came
together and wrote software
that allows those decisions
-- those precise decisions
about insulin delivery --
to be made in software.
So now I put one of these
together for my daughter.
There are many other people
who put it together for
themselves and what it means
is that she gets those
precise doses of insulin in
a much safer and much more
effective way.
So basically what happened
is by liberating the data
from the device we were
able to come up wit ha much
better way to
deliver therapy.
And I think it just shows
the power of engaged
patients and how important
it is to liberate the data.
Not just electronic health
record data but also device
data, right?
Patients with Type 1
diabetes shouldn't have to
outsmart the very companies
that they depend on for
these life saving devices
and I think that's what
we've seen the community do.
(applause)
James Hamblin: And I want
to move to Dr. Linehan.
You have been for decades
doing research in renal cancers.
And when you trained as a
urological surgeon there was
only one disease -- kidney
cancer
-- it had the same treatment.
And you came in and
said that, "You know,
this isn't working.
These are -- these are
different diseases."
Half of which you basically
discovered yourself.
You were doing precision
medicine before it was cool.
(laughter)
How -- I mean, what
led you to that?
What was your moment of
saying we need -- something
needs to change?
Marston Linehan: It was --
it was very each in a way.
So as you said, I'm a
urologic surgeon and so if a
patient comes to someone
like me with a small kidney
tumor we can cure 95
percent of those patients.
But if -- but if they came
certainly 34 years ago when
we started with advanced
disease 82 percent of them
died within 24 months.
So I said, "You know, we've
got to do something about this."
So we decided to try
and identify the gene.
We thought it was a
gene for kidney cancer.
We had no idea what a
mountain this would be to climb.
And so we started out to
look for the gene
for kidney cancer.
There was no human genome
project at the time.
It took us 10 years to
find out first gene.
We worked on one thing for
10 years to find that.
We now know that kidney
cancer is not kidney cancer.
It's a number of different
typos of cancer that just
happen to occur
in that organ.
They look different
under the microscope.
They have very
different courses.
Some are very indolent.
Some are very aggressive.
And they respond different
to therapy and we know
they're caused by
different genes.
And we use that now in our
management of patients
all the time.
I'll give you an example.
We started with studying
patients who had kidney cancer.
And again, as I said,
it was very difficult.
There was no technology to
really do it at the time so
we started studying families
with rare forms of kidney
cancer and our hope was that
those genes would be the
main genes for the
non-inherited kidney cancer.
That turned out to be the
case for our first gene is
the main gene for the
non-hereditary main type
of kidney cancer.
But, I'll give
you one example.
We saw a young lady came
up from -- a young girl
-- young woman.
Came up from Charlottesville
-- 18 year old -- and she
had a big kidney tumor.
She came up with her mom and
I took out that kidney and
that tumor on May 23, 1989.
And even with my -- with our
surgery we still lost her.
She died on February 1,
1990 -- seven months later.
And her mom died 14 months
after that of kidney cancer.
It ran in the family.
It took us 18 years to
figure out actually
what she had.
We now know what that is.
We now know that gene.
We now know that disease.
We manage those patients
very differently than we
manage patients -- excuse
me -- with other types of
kidney cancer.
So, we saw -- I saw a woman
yesterday who was
a very nice woman.
Forty-two years of age.
She and her husband went
to -- she had a very large
kidney tumor.
Went to a very well known
medical center in the south
and they looked at that
and they said, "Gee,
that's a big kidney tumor,"
And that tumor has spread to
her liver and different
parts of her abdomen.
And they said, "You know, we
don't think surgery's going
to help here and there's
not a lot we
can do to help you."
And actually then they
contacted us because they
knew we had an
interest in this.
And we saw this lady and we
agonized over what to do and
we decided to go ahead and
do surgery even though we
knew we couldn't get all the
tumor out but we had seen
people like this do well.
So we did that and we
took out a lot of tumor.
There was still a lot of
tumor left in her liver and
different things.
She's now about 16 weeks on
the therapy targeting -- we
know the cancer gene that
causes her cancer that runs
in her family.
And yesterday we saw her and
we couldn't find any cancer
on her in the x-ray.
(applause)
I'm not saying that
this won't recur.
And I'm not saying we don't
have miles to go
before we sleep.
But we are really encouraged
by this and we're encouraged
-- we're seeing with the
other types of kidney
cancers the first gene that
we identified, that pathway,
the FDA has now approved
seven drugs that target that
cancer gene pathway.
Now again, we've got a lot
of work to do and I couldn't
practice medicine really
without what we now call
precision medicine.
I really couldn't do it.
It helps us decide
what operation to do,
whether to do an operation
or not, what drug to give.
But most importantly, our
real goal is prevention.
And the President
mentioned this.
Once we understand
the genes,
the pathways -- then
we ought to -- well,
we hope we'll be able
to prevent those.
And so it's -- it has -- it
is incalculable to us what
this has meant to how we
manage these patients.
And it's had a huge effect,
on which surgeries we do,
certainly what drugs we do.
The drugs we gave this lady
we saw yesterday are known
in my field not to
work in kidney cancer.
But I say to them, "Look,
these are different diseases.
This is a different
type of kidney cancer."
So I think we've got
a great future ahead.
James Hamblin: When you talk
about prevention is there --
is there an example?
Immunologic therapy, CRISPR,
are we talking about how we
could keep that gene from
being expressed or actually
remove the gene?
Is there an example of
how that might work?
Marston Linehan: Well,
there's a number of
potential strategies
like that.
But what I was really --
what I was really thinking
about here was
understanding that pathway.
And then for example, if we
could get to the day -- and
I say this to
patients every week.
You know, that
we're not giving up.
We're not stopping until
we've got a way to prevent this.
And to have, you know, I'd
say a nice lady like you
that we could
give, you know,
if we had a 21 year old we
could give a pill and say,
"You take this pill for a
month a year and call us if
you need us."
So, that's one strategy.
James Hamblin: And so what
we have found here is that
what we thought to be one
disease, even in the 1980s,
is how many diseases today?
Marston Linehan: We know of
at least 16 different types
for sure that cause this.
James Hamblin: At least 16?
And --
Marston Linehan: And we
have more genes to find.
James Hamblin: Yeah, I
mean, could it go
into the thousands?
Is every tumor going to
be its own individual,
you know?
Marston Linehan: Well, we'll
have to see but I think so.
I think every different
tumor is -- I don't want to
say is going to be a fight
to the death each one,
but just about.
I mean, each gene pathway
for the different cancers
could potentially have
a different strategy.
So, it takes -- we say
to ourselves and to our
patients, "This
is a marathon,
it's not a sprint."
James Hamblin: So, the question that raises in my mind
then, is how does that not
become exorbitant cost when
pharmaceutical companies
need to move away from a
drug that can treat many
people to drugs that are
treating small groups of
people -- just as a matter
of scale and production.
The President: Well, what
the doctor has identifying I
think is the fact that we're
just in the infancy of all this.
we're just beginning to
understand at the molecular
level, at the genetic level,
what exactly is happening
in various diseases.
And the goal of the
Precision Medicine
Initiative is to figure out
how to break down some of
the structural or
institutional barriers that
prevent us from making the
big leaps over the next
several years.
So I'll just give you
a couple of examples.
With respect to being able
to map out what's happening
with these different
diseases and what are the
genetic similarities,
what are the differences,
why are some people
doing okay with it,
why are people not, the
more samples we have,
the more data we have, the
more we're going to be able
to learn.
Part of the problem
with have right now is,
is that every patient's
data is solid -- it's in a
hospital here, a hospital
there, a doctor here,
a lab there.
And so the goal here is if
we can pool and create a
common database of
ultimately a million people
that's diverse so that
they have a lot of genetic
variation, we can now
take a disease that may be
relatively rare, but because
we have a pretty large
sample size and start seeing
patterns that we might not
have seen before.
But a couple things that
requires -- it requires,
first of all, us
understanding who owns the data.
And I would like to think
that if somebody does a test
on me or my genes,
that that's mine.
(applause)
But that's not always how we
define these issues, right?
So there's some legal
issues involved.
In terms of the model that
we use for health records
that hopefully will be
digitalized more and more,
companies help hospitals
keep and collect that data.
And they should
get paid for that.
They're building software;
they're building
an infrastructure.
On the other hand, we don't
want that data just trapped.
So if I am sick and
voluntarily I want to join
with other people who have a
similar disease to mine and
donate our data to
help accelerate cures,
I've got to be able to work
with the electronic health
record companies to make
sure that I can do that easily.
And there may be some
commercial resistance to
that that we have to talk
about -- although we're
seeing some terrific
participation now,
and that's part of
what we're announcing,
of those companies in terms
of helping that happen.
There's privacy issues.
We've got to figure out how
do we make sure that if I
donate my data to this big
pool that it's not going to
be misused, that it's not
going to be commercialized
in some way that I
don't know about.
And so we've got to set up
a series of structures that
make me confident that if
I'm making that contribution
to science that I'm not
going to end up getting a
bunch of spam targeting
people who have a particular
disease I may have.
And so across the board,
what we're trying to do is
just make sure that all
the various players in the
health care system,
including the researchers
themselves, are invested in
us building
this broader capacity.
Because this can potentially
also change how we do research.
Right now, what happens is
the best researchers and the
best universities,
oftentimes they're kind of
hording their samples
because -- apparently -- I'm
not a researcher, but
that's --
(laughter)
Dr. Vallabh: Never too
late, Mr. President.
(laughter and applause)
The President:
That's a good point.
I don't think I'm
as smart as you are, so --
(laughter)
-- the
transition may be difficult.
Mr. Look: You
can try software.
(laughter)
The President: But
my understanding is,
is that the basic model of
research at universities is
having your samples, that's
really valuable because
that's how you get grants.
And on the other hand, if
we've got a million samples
that are accessible to
researchers from all across
the country and all
around the world,
and they're all able to at
least shorten the lines of
inquiry and collapse them
so that they can eliminate
those things that are less
likely to work and pursue
those things that are
more likely to work,
before you start getting
into the more detailed
aspects of the research --
that ends up being a cost saver.
Now, you're identifying
one last point,
which is something that
we've got to have some big
brains out here figure out,
and that is the economics
of treatment.
Because right now,
if you have a big,
blockbuster drug, it may
work really well for this
individual, not so well
for that individual.
In the aggregate, it
works pretty well,
and as a consequence, it
gets prescribed a lot and
the drug company can
make a lot of money.
If it turns out that we
start knowing that it really
works well for you, but
it doesn't work well for
Francis -- Francis is
no longer buying it,
and we now have a smaller
group of potential
customers, and so there may
be some pause in terms of
making that investment.
And what we have to be able
to do is to think about --
much in the same way that
we have to think about
vaccines, and right now
we're working -- we just had
a meeting about Zika, where
we actually think there's a
promising pathway for
diagnostics and vaccines
on this.
It's not a real
complicated virus,
apparently -- but how do
we figure out a production
cycle that makes sense.
We're going to have to
make some decisions.
And this is where
Senator Lamar Alexander,
who is taking great interest
in this -- this is going to
be part of the legislative
process that we've got to
think about.
Are there ways where the
government says we step in
-- not to pay
for every drug,
but there may be areas where
we subsidize drugs that are
really effective for a
small group of people,
and there ends up being some
cross-subsidies with other
drugs, we create markets --
there's a whole bunch of
complicated questions that
we're going to have to answer.
The final point I'll make
is over the long term,
we can save a lot of money,
rather than make this more
expensive, if every drug we
prescribe actually works.
If the doctor with his
kidney patient knows that
this is not going to work,
and that's not going to
work, he's not going to be
wasting a huge amount of
time, effort,
surgery, et cetera,
on a path that's less
likely to succeed.
He's going to be saving
money and focusing entirely
on those pathways that we
know are going to work.
Dr. Hamblin: And to kind of
piggy-back on that and note
that CDC announced
last month that 47,000
Americans died in
2014 of drug overdoses,
the majority of
which were opioids.
That number has
doubled since 2000.
Do you see a role for
precision medicine in
addressing that, what
they're calling an epidemic?
The President: Well, it's
a complicated question.
Part of the problem that
we have with the opioid
epidemic is that, in 85
percent of rural communities
we don't have mental
health
or drug treatment facilities.
So I want to make sure
people understand precision
medicine is not a
replacement for making sure
people have just
basic health care.
(applause)
And we have to make sure
that that's still in place.
But we don't yet know the
genetic basis for addiction,
for example, in ways that we
may discover 10 years from
now or 15 years from now.
And so it could end
up having an impact.
I think, short term, the
opioid problem really has
more to do with the fact
that a lot of people don't
have basic health care.
They put off getting
help on pain management.
The easiest way to do it
initially is just to get
some pills; the pills
run out and then, sadly,
it turns out that heroin is
a cheaper way to refill your
prescription and people
are getting hooked.
So I think that's actually
a different category of problem.
But what it does speak to is
the fact that the more we
know about how to treat
a particular problem,
the more effectively
we treat that problem,
over time, the more
efficient and cost-effective
the health care
system will be.
James Hamblin: Can I turn to
Sonia and Howard who are --
this'll be my
final question.
Talking about
barriers to sharing.
You've both been very open
advocates for donating data.
What has -- how do you
encourage people to donate
data and feel safe about
it and understand
the importance?
And what are the barriers to
people feeling safe about
that going forward?
Sonia Vallabh: I think it
continues to be a challenge
in the sense that
we've come a long way.
I'm so grateful to the
people behind Gina and the
people who are working to
make sure that people with
genetic variants like mine
don't fear discrimination.
But they still do.
And I hear from patients
all the time who are really
concerned about even letting
their PCP know that this
disease runs in
their family.
It's tricky with a disease
where the phenotype is sort
of lurking.
They don't have a health
problem right now.
And they kind of want
to coast and, you know,
hide among the general
healthy population as long
as they can.
And what I hope to convey to
people when we talk about
this is the sooner -- we
don't have a treatment now.
But the sooner they become
plugged into a system that
is working on one I think
the better for everyone, right?
Having baseline data about
what is your particular body
like today will help
enormously down the road if
we have a treatment
and want to ask,
"Is it making a difference?"
Or if they think they're
having onset and they think
their disease is beginning.
And, you know, in rare
diseases I think we depend
so much -- all research
depends so much
-- on patient participants.
In rare diseases every
person who comes forward to
participate is like a
quantum leap in the amount
of data we have.
So, I hope that we keep
working on the sort of legal
framework behind celebrating
patients who come forward.
And I think we're headed
in the right direction.
Howard Luck: So, in the Type
1 diabetes world fortunately
finding people who are
willing to donate their data
is not a problem.
There are plenty of
people who say, "I'm in.
Just tell me how to do it
and you can have my data
because it's for
the greater good."
The challenge is
really two fold.
One is with both device
makers and also cloud
service providers who house
the data there's this fear
where they may say, "Well,
we don't know what people
are going to do
with the data."
We're worried about the
liability if that data gets out.
So, I think one thing we
can do is just make it very
clear that by publishing
your data protocols you're
not accepting any
new liability.
It is up to the people who
take that data downstream to
make sure they're using it
in a safe, effective way.
Another challenge -- and
this is an easily fixed one
-- is just making the
interfaces available.
Device companies could
publish the data and control
protocols for their devices.
And cloud service providers
can use very simple
well-known APIs
-- Application Programming Interfaces.
The President and I are both
wearing out FitBits
today, right?
There are APIs that let
us pull our FitBit data.
There should be APIs just
like that that let us pull
our diabetes data.
These are very
solvable problems.
James Hamblin: One last
thought from Dr. Linehan.
Marston Linehan: You know,
you mentioned about --
actually the President
mentioned about things like
tissue banks and things.
My assistant the other
day said to me -- said,
"Our clients have said, 'You
work with 140 people.'"
On this kidney -- on from 29
different labs and branches
at the NIH -- National
Institutes of Health.
And over the years our
approach has always
been the same.
That you shouldn't be
surprised the progress
people can make working
together if you're not quite
so concerned about who
gets credit for the work.
And I think that --
(applause)
And that's all
I -- you know,
you get so tied up and
then but we all think.
Those of us in science or
those clinicians all think,
"Why did we go in this
field in the first place?"
It was to help patients.
And then you got involved
in all these things about
promotions and who knows
what
-- publications or something.
But the leadership
comes from the top.
The good news is we
have great leadership.
The leadership comes from
the top and I think we can
change the culture.
It's going to take a little
bit of that but we can do it.
The President: One of the
charges I've given all the
federal agencies working
together on this is looking
at the regulatory framework
we have that was designed
for another era of medicine
and making sure we update it.
And that's where I think
the work that we do with
Congress can be very
important here.
And there's good bipartisan
support for how we think
about that.
So, for example, we've got
a new FDA Commissioner,
Robert Cardiff (sic)
-- congratulations, Doctor.
(applause)
But the FDA traditionally
has thought about protecting
the public health in terms
of these are medical devices
and these are drugs,
and there are certain
categories, and here's
certain protocols
that we go through.
And when it comes
to gathering data,
disseminating data, making
sure it's accurate and
valid, figuring out how it's
communicated to the patient
or the individual who's
interested in it --
sometimes we're fitting
square pegs into round
holes, and we may have to
re-conceptualize how we
think about this to
open up this space.
I mentioned
researchers earlier.
Well, part of the reason
that people are worried
about getting credit is
because research dollars and
grants flow in the direction
of who gets credit.
And so rethinking how we
design -- the NIH and other
agencies redesign their
grant-making to encourage
collaboration
rather than siloing,
that's going to
be important.
So there's going to be a
whole range of areas where
we may need new safeguards
-- for example,
in terms of privacy and
security of the data that's
being disseminated.
There may be other areas
where we need to break down
regulations that might have
applied and made sense in
another era of medicine but
aren't going to apply now.
And that's the kind of
evaluation that we're doing.
Because ultimately, this
is going to be successful
because everybody in this
process starts rolling in
the same direction.
This won't work unless we
have the private sector
coming up with innovation.
And that includes
the drug companies,
and that includes
manufacturers of --
ultimately something that's
just tracking your heart
rate may be able to track a
whole bunch of other stuff
that is giving you a
constant flow of information
on a daily basis to
keep you healthier.
We want to encourage
that kind of innovation,
and we don't want to have
bureaucracy stand
in the way of that.
On the other hand, we also
know that there's going to
be possibilities for abuse,
and really making sure that
we have private sector
providers, researchers,
doctors, academics,
government officials,
agencies all figuring
out what's the basic
architecture and having an
open mind about continually
updating it, modifying it --
if we get this right now --
and this includes,
by the way,
the Cancer Moonshot that
Vice President Biden is
initiating, because a lot of
the progress is going to be
in this same space, making
sure that we're all working
in the same direction
-- if we do that,
I'm confident that, at
least for Malia and Sasha's
generation, they're going to
be able to make progress in
ways -- and live healthier
lives in ways that we could
not imagine.
(applause)
