Dan Roden: Unluckily, they go on to for pages and pages
and pages, because what they did was they have a pretty big report on the future of
personalized medicine, and you can see that I've stolen the slides because they spell
"personalized" the wrong way.
[laughter]
And where's Derek?
Is he still -- yeah, sorry.
I'm sorry.
Derek Scholes: It's spelled correctly.
Dan Roden: Right, well, you would say that.
I grew up in Canada, so I'm schizophrenic.
I can't even remember what the right way to spell that is.
So they have a report that has 80 recommendations, and I think they read each one of those 80
recommendations over the course of several hours.
So they introduced us to the project, they had speakers from outside, and then we broke
away the afternoon to think about implementation, and then -- and I joined one of the implementation
groups where -- I don't have much to report because, basically, they just said, there
aren't enough people here to -- and there are stakeholders missing, and at the end of
the day, they have an implementation plan.
I will telegraph the answer and that is, if you go to the European Science Foundation
website, it looks like the European Science Foundation itself is being wound down.
So I'm not sure how relevant this is, although this is a huge amount of work, and it has
some really nice ideas about what personalized medicine is or likely to be.
So I'm going to run through this quickly using their slides and some of my comments around
them.
So the notion is that there are different responses.
This was from -- I can't remember the British guy who runs the phenotyping part.
They generated a report, and then the idea is that that report generated another report
-- this is the cover sheet for the other report -- and these are the things that they want
to accomplish.
They've had many, many meetings to sort of discuss various aspects of this, including
sort of technology meetings, disease-specific meetings, big picture meeting, a stakeholder
meeting, and then I was at the roll-out meeting, which was in January 2013.
So the graphics are this, that the centerpiece is the patient, or is the European Union citizen,
and that's where it starts.
And there are layers on top of it, so one of the layers that they're very interested
in, and this resonates with some of the things that we're trying to do or thinking about
things that we would like to do within things like eMERGE, and that is sort of redefine
disease in terms of the genomic markers, the biomarkers, the expected responses to drugs
or other therapies.
And then so they have that center -- front and center.
This quote -- and you'll see the slides are all the same way -- the quotes, these are
their quotes, and these are sort of my notes around their quotes.
So sort of the idea was to move to sort of proactive and disease prevention; you know,
a lot of thinking about data handling and about models and decision-making processes.
So thinking about trial designs, thinking about N of 1, which I think is another way
of thinking about the sort of rare disease initiatives, targeted populations, looking
at developing and deploying biomarkers, engaging regulators, so I'm glad that we have regulators
here.
The creation of European wide and wider networks; they were very interested in the idea of creating
networks across Europe or across the world, I'll come back to that.
And they think about biomarkers, including imaging linked to specific phenotypes, and
linking that to the drug development initiatives.
This reminds me that we had a big debate about what genomic medicine was going to be, and
this is clearly a vision that goes way beyond what we've defined as genomic medicine here.
But it is personalized medicine, not genomic medicine.
So then there's this word that I learned called interdisciplinarity, and interdisciplinarity
is sort of -- this is the definition, and there was a lot of thinking about sort of,
what the patient should be thinking about this, avoiding using the wrong kind of language,
and then the idea of personalized medicine being more than genomic medicine.
They had this idea of -- and there's a graphic that I just didn't include in this slide set
of Google maps, sort of Google maps has multiple layers, and you could sort of think about
this as multiple layers of proteomic information, environmental information, drug exposure information,
socio-cultural information, all sort of layered on top of each other to give sort of an accurate
picture of an individual, again, the individual at the center of all this.
So you have to have IT tools; they talked a lot about the cloud, and talked a lot about
who was going to get access to this information, whether it was patient, whether the information
would follow the patients, would the information follow the doctors, and grappling with issues
like that.
The electronic medical records, they were very clear that the data followed the patient,
sort of the patient moves, the data follows from that.
Given that they have sort of nationalized healthcare systems across Europe, it still
wasn't clear to me that if you were in Holland and moved to Belgium, or, better yet, Holland
and moved to Macedonia, that your records were going to follow you in a way that was
going to be useful.
It was an issue in Europe across borders, and they didn't talk about the fact that they
had different alphabets as well.
But they were very interested in sort of figuring out a way of having electronic medical records
systems where the patient would sort of own the data, and they would move with the patients.
This is the manta, is the patients have the right to manage their own data.
It's not clear that that was universally accepted.
And then there was this idea that, you know, some of the data ought to be used for the
common good, and how to do that was not very clear.
And then they worry about education just like we do, and that was healthcare providers and
the public, and that would have to be lifelong, and the education would require biological
underpinnings as well as education in specific areas like IT.
They have 80 recommendations altogether.
So after -- that was sort of -- the morning was going through this -- that set of slides,
and those slides have recurred over and over again with a lot of words that I've taken
out for you and for me.
Then they had speakers from other places.
So I spoke for 10 minutes about what we're doing in eMERGE and in the Genomic Medicine
Working Group.
Somebody, I can't remember who it was spoke, from the European Commission, and they had
a nice cartoon, and they had this idea that the European Commission was -- you know, needed
to invest in this; not clear whether that was just words or whether that was actually
going to happen.
The Canadians were there, and they were very impressive, as Jeff has already alluded to.
They sort of -- they seemed to have their act in gear.
A large investment from multiple stakeholders, and they hadn't announced the projects that
they were going to do in their genomic medicine space, but they were -- I went to dinner with
them afterwards and ate mussels, and it was clear that they knew who we were going to
be, but they weren't allowed to talk about it, and I think I understand why now.
But one of their slides was this, so I thought I'd show this, and that's that the Canadians
-- it's not a big country, but they managed to sort of organize themselves well, but the
other thing that they've done is that they've created a lot of alliances with other places
in other countries, and that was a sort of theme that I thought resonated throughout
the meeting, that what you can do in one country in Europe was insufficient, what you could
do across Europe was getting there, and what you could do if you allied Europe and the
United States, or Europe and the United States and Canada, those are the main partners.
They hadn't thought about China, Japan, those are harder partners to do, but these are the
kinds of things -- these are the kinds of alliances the Canadians listed.
So the breakout groups were sort of to think about these questions.
And, as I said, I found the breakout groups not terribly helpful.
The -- and then they have sort of Phase 1, Phase 2, Phase 3 implementation.
And the Phase 1 is, I think, sort of, is mostly where they are in here; they're not beyond
that right now.
So the -- this is the last slide.
The notion was they were going to finally publish the -- they were going to publish
the final report, they were going to do more publications.
I don't know what the COST conference was -- I should've just taken this bullet point
out -- but I thought I'd just put it in because I think the COST conference must deal with
money --
[laughter]
-- but I wasn't sure about that.
They had the launch and implementation event, they had the key stakeholders and action plan
presentation.
They really -- the key point was to go, not just across the -- Europe, but across the
world.
This is the G28, I think.
And they specifically mentioned, you know, American sites as well as Canadian sites.
And then the last bullet point was, who's going to take all of this over now that the
European Science Foundation is going to sunset itself.
So that's -- so it was a pretty broad vision of what personalized medicine might be.
I don't think it had any surprises, but it was a pretty comprehensive view, and it was
very patient-centered, and I'll sort of just leave it at that.
And I'll try to answer questions; it's been a long time since I was there, but I have
notes.
Teri Manolio: Great.
Questions for Dan?
Yes.
Geoffrey Ginsburg: Do you have any idea if there is an investment
that's being made across any of these 80 recommendations, or is it, you know, is it --
Dan Roden: You know, no, I don't, and the last point
really drives it home, I think.
So the European Commission wants to do it --
Teri Manolio: Dan, could you use your microphone please?
Dan Roden: I'm sorry.
The European Commission wants to do it, I think.
And I hope I'm not misstating it, I don't think I snoozed when they sort of said, well,
we're going to put a €500 million into this, and I wasn't paying attention.
[laughter]
They did talk about, you know, investments that have gone on over the last five years
in the personalized medicine space in -- across Europe.
Not country-centered, but through the European Commission, and there has been an investment
of, I'm going to say a billion Euros, something like that, over the past five years.
It wasn't clear how -- you know, where the commitment was to go forward with that.
They were very worried about the current economic climate, and they were sort of hesitant to
go further than that.
Teri Manolio: Other comments?
Great.
All right, thank you much.
Last, but not least.
So Geoff is going to tell us a little bit about what we might do in the fall with the
other international groups.