I’m here to talk about your data,
and more specifically your health data.
Why ? Because I like your data, I love your data
and more specifically your health data.
We created four years ago
a company whose goal is to produce what we call digital therapies.
What is it ?
These are personalized support services
which are available on smartphone or on the web,
that will help our users prevent chronic diseases.
Moreover, these services will help our patients,
that is to say our users who unfortunately said
a chronic illness,
– chronic diseases, these are cardiovascular diseases,
diabetes, cancers, etc.
So our services will enable our patients
who reported one of these chronic diseases
to better understand their disease,
to better understand and follow their treatment,
and also to know better on a daily basis
what are the good habits to take
to live better and better manage the disease.
We think we can have a huge impact.
According to the World Health Organization,
chronic diseases are now the leading cause of death
in the world, before all the other causes together.
36 million people die each year
because of a chronic illness.
It’s on the human level; on the financial plan,
diabetes alone accounts for 20% of health costs in the United States.
20% of health costs!
And yet it is not inevitable
because these chronic diseases all have one thing in common:
they are for many due
our way of life and our daily habits.
According to the World Health Organization,
by adapting our lifestyle,
minimizing the risk factors we face each day
because of our behaviors,
we could avoid 75% of cardiovascular diseases – 75%! –
and more than 40% of cancers.
It’s within our reach, it would still be necessary
that all of us have good information on what to do
according to my profile, my behavior,
of my context or my genetic history.
That’s what we do today: services
extremely responsive, extremely personalized
depending again on your profile, your behavior,
context, but also your medical and genetic data.
The more data we have about you,
the more we will be able to better accompany you,
to help you live better
and maybe even, it’s ambitious, to save your life.
So it’s a noble cause.
The subject on this cause,
is that I already see some in the room talking,
and I’m sure there is at least a third of the room or even half,
maybe 3/4 of the room,
– I will not say the whole room otherwise I have to leave –
saying to each other:
“What is he saying?
Another one who talks about my health data, who will take them, use them,
I do not know where they will go,
I will lose control,
and it’s a safe bet that we will use this health data against me,
without my knowledge. “
I can not blame you because today,
there is not a single press article that talks about health data
without ending with a warning:
“Be careful where you put your health data.
Keep your health data for you. “
There is not a single report on TV
that does not end on an even more distressing opening
on an alleged Orwellian world where we would have returned without our knowledge,
where everyone wants us badly compared to our data
and specifically our health data.
So I’m not here to be naive,
I’m not here to be angelic either.
These data have such potential that I would just like to reframe the debate
and share with you some thoughts.
Already, reframing the debate, because in France,
there can be no misuse of your health data.
The law is very precise on this point,
there are organizations like the CNIL that look after the grain, and rather well.
Do not worry, you are protected.
There is a very important legal protection
at the level of your health data
and this legal protection will be further strengthened in May [2018]
upon the entry into force of the General Data Protection Regulation.
You will probably hear a lot about it in the coming months.
This new general data protection regulation
introduces a lot of protection over your health data.
In addition, very concretely, a health data today
must be encrypted, must be encrypted.
Which means that if it’s not your doctor or if it’s not you,
no one else can decipher your health data.
This is an important point, because today you can tell yourself …
You can trust the law, in regulatory bodies
to share your health data.
So sleep quiet, citizens, everything is fine, and share your health data.
I just want to come back to a point I just made,
not the security of the data.
Because there, the security, the protection of your data, it is there.
But it’s interesting to watch the debate from the other side.
Since the beginning of the talk,
I always talked about your health data.
The question is: are you sure these are your health data?
There I lost the last quarter of the room.
But the question is not so stupid.
Because the answer is not so simple.
First element of answer: a datum as such has no property.
It’s a legal fact.
Let’s go on, you will tell me, this is a legal argument,
we evacuate it immediately, we will be much better,
anyway, my data belongs to me, it’s mine,
she is so personal that she belongs to me.
Yes but no.
Another example: today,
imagine that a data finally, a data of health,
Imagine it as an accessory of one of your organs.
After all, your heart rate or your blood pressure
is only an accessory of your heart,
your blood sugar level can only be an accessory to your pancreas,
it comes directly from this organ.
By following this principle, if we refer …
– I believe it’s Article 16 of the Civil Code –
this article 16 puts forward the principle of unavailability of the body.
Concretely, in the civil code, maybe you did not know,
but your body does not belong to you,
in the sense that you can not sell it.
If in the civil code, your body does not belong to you,
if we consider that a health data is an accessory of one of your organs,
in fact, a piece of data does not belong to you.
You will say to me, “It does not matter,
they are still legal nonsense, let’s pass, let’s evacuate them,
the data, it is on me, I do what I want,
so pretty much, a priori, everything is fine. “
But are you so sure?
I am referring to what an expert says about these issues,
the lawyer Pierre Desmarais,
who is an expert on these issues, and speaks to him about legal paternalism
because today, French or European lawmakers
consider that we are not sufficiently autonomous on these issues.
And today very concretely,
we are deprived of our free will
regarding the subject of health data in particular.
I take an example:
sequencing the genome.
Sequencing of the genome,
that’s excellent news
because, ultimately, it’s the ultimate in your health data.
It’s a huge mountain of data about you.
Good news, 15 years ago, it cost about $ 3 billion.
Now you find it on the internet
from US startups a few hundred euros.
This is great news because you will have direct access
to a huge amount of data about you.
Imagine what you can do with it.
You will be able to use them
to correlate with the data of people who have the same profile as you,
to correlate with your family members,
you’ll be able to confront them with your profile, behavior,
context, and you’ll be able to tell you …
in any case discover
the risk potential you have to trigger a chronic disease.
I do a little bit of people, that’s what Angelina Jolie did
when she sequenced her genome:
she discovered she was suffering from a recession of some gene
who predicted, unfortunately,
a very high rate of having breast cancer in the next few years.
She chose double mastectomy for prevention.
It’s a very good use of the data.
We can go even further:
imagine the wealth of data in your genome,
the wealth of health data that surrounds you,
your behavior, your profile again,
the wealth for you of these data in relation to your health,
you might know what your risks are
and what are your assumptions of triggering cancer
or cardiovascular disease in a few years.
And so adapt your behavior.
It’s great, but it’s totally forbidden.
In France, it is completely illegal, it is even criminally reprehensible:
you can not have your genome sequenced in France.
For reasons of legal paternalism that have been mentioned earlier.
I’m talking about that …
The example is treated a little fast, a little simplistic.
Sequencing of the genome for therapeutic purposes exists in France in very specific cases,
but the point seemed to me extremely interesting to tackle
because it emphasizes for me the real question,
in relation to this debate on health data.
Today this debate is totally polluted
by some paranoid nonsense, which is to say to oneself:
“My employer will have access to my data
and fire me because I smoke too much. “
Or “My mutual will have access to my data,
and because of my bad behavior – not enough walking, too much alcohol –
will automatically raise the amount of his premium. “
We are very far away because it is illegal
and today without these actors asking you,
it’s totally impossible for them to use that data in that context.
The big problem is that today, there is such paranoia on this market,
that everyone closes.
Everyone is paralyzed at the thought of sharing their health data
and we miss out on the potential of this health data.
That’s the purpose of this talk, maybe to modestly open your mind
by saying to you: “Be reassured because the law, the CNIL watch over you
as to the possible misuse by third parties of your health data. “
But for all that, fight to free your health data,
have confidence in your health data,
have confidence in their potential
to help you live better and help you save your life.
Have confidence in your health data, because tomorrow,
they will form the basis of your relationship with your doctor.
It’s really time today to leave your health data
to save your life and that of others.
Thank you.
(Applause)
”
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