 Unluckily they go on for pages and pages and pages because what they did was they they they have a pretty big report on the future of personalized medicine and you can see that I've stolen the slides because because they spell personalized the wrong way and and where's Derek yeah sorry it's right well you would say I grew up in Canada so I'm schizophrenic I can't even remember what the right way to spell out is so so they have a report that has 80 recommendations and I think they read each one of those 80 recommendations over the fruit so the course of several hours so they introduced us to the the project they they had speakers from outside and then that we broke away the afternoon to think about implementation and then and 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 their stakeholders missing and and at the end of the day they have an implementation plan I will telegraph the answer and that is that 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 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's different responses this was from I can't remember the the British guy who ran 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 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 meetings a stakeholder meeting and then I was at the rollout meeting which was in January 2013 so the the the graphics are this that the the centerpiece is the patient or is the European Union citizen and that's where it starts and there's 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 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 that quotes these are their quotes and these are sort of my notes around their quotes so they sort of the idea was to move to sort of proactive and disease prevention a lot of thinking about data handling and about models and decision-making processes so thinking about trial designs thinking about N of one which I think is another way of of the 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 then they they think about biomarkers including imaging linked to specific phenotypes and linking 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 and interdisciplinarity is sort of this is this is the definition and 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 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 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 sociocultural information all sort of layered on top of of each other to give a sort of an accurate picture of an individual again the individual at the at the center of all this so you have to have it tools they 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 with the information would shut would follow the patients with the information follow the doctors and grappling with issues like that the electronic medical records there they were very clear that the data follow the patient that's sort of though the patient moves the data falls from that I'm 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 they didn't talk about the fact that a different alphabets as well but they were very interested in sort of figuring out a way of having electronic medical record systems where the patients would sort of own the data and they would move with the patients this is the mantra as the patients have a 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 worried about education just like we do and that was healthcare providers and the public and that would have to be lifelong and and the education would require biological underpinnings as well as education in specific areas like it they have 80 recommendations altogether so after that so that was sort of the morning was going through this this that set of slides and those slides that recurred over and over again with with a lot of words that I've taken up for you and for me then 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've sort of they seem to have their acting gear a large investment from multiple stakeholders and and they hadn't announced the projects that they were going to do in the in their genomic medicine space but they were clear it was I went to dinner with them afterwards and ate muscles and and it was clear that they they knew who that 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 are not it's not a big country they've 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 and that was a sort of theme that I thought resonated throughout the meeting that 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 had allied Europe and the United States or Europe and the United States in Canada those are the main partners they hadn't thought about China Japan those those are harder partners to do but but these are the kinds of things these the kinds of of alliances the Canadians listed so the breakout groups were sort of to to think about these questions and as I said I found the big breakout groups not terribly helpful the and then they have sort of phase one phase two phase three implementation and the phase one is I think sort of mostly where they are in here they're not beyond that right now so the this is the last slide they the notion was they're gonna finally publish through they're gonna publish a final report they're gonna do more publications I don't know what the cost conference was I should have just taken this bullet point out but I thought I'd put it in because I think the cost conference must deal with money but I wasn't wasn't sure about that they had the launch and implementation event they had their the key stakeholders and an action plan presentation they really that the key point was to go not just across the Europe but across the world this is the 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 gonna take all this over now that the European Science Foundation is gonna sunset itself so that's so it's 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 just sort of leave it at that for I'll try to answer questions it's been a long time since I was there but I have notes great questions for Dan yes do you have any idea if there's an investment that's being made across any of these 80 recommendations or the last point really drives it home I think so that the European Commission wants to do it the European Commission wants to do it I think and I hope I'm not mistaking it I don't I don't think I sort of snoozed when they sort of said well we're gonna put 500 million euros into this and I wasn't paying attention they 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 not not country-centric but through the European Commission and there has been an investment of I'm gonna 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 other comments all right thank you much last but not least so Jeff is going to tell us a little bit about what we might do in the fall with the other international groups