 So, I am Mark Williams, and I'm beginning to feel a little bit about, that I understand a bit about Kevin Bacon's life is like, six degrees of Mark Williams is what we've been experiencing this morning, although I am looking forward to the rebranding of Genomic Medicine 4 as Mark Williams, Genomic Medicine 4, which seems to be the direction that we're going. So, Sean's question to Eric was very timely for what I'm going to be talking about, and I don't have any slides with this. But I was asked to give a summary of the dissemination and implementation meeting, the fifth annual meeting that took place in Bethesda a couple of months ago. There is a trans-NIH effort in dissemination and implementation science, and there are a number of efforts that take place. Leads for this are in the National Cancer Institute and the National Institutes for Mental Health, and there are a number of other institutes that are collaborating with this. And the annual meetings are one of the highlights of this, where people can get together and really talk about what they're doing in relation to dissemination and implementation. And to give you an idea of the popularity of this, there were probably between seven and eight hundred attendees at this particular conference, and this is something where everybody comes on their own dime. So I think it really shows the enthusiasm for this. Francis Collins opened the meeting and described the NIH's commitment from the top to dissemination implementation. Interestingly enough, there was one talk that did feature guitars, but in a shocking upset, it wasn't Francis's talk. So for those of you who know his predilection for bringing his guitar to these types of things, he didn't actually this time. Somebody else did. The reason that that's relevant to the Genomic Medicine Group and to the NHGRI is that NHGRI actually sponsored a workshop at this meeting. This is the first time that Genome sponsored a workshop at the Dissemination Implementation Meeting. I organized the workshop and moderated the session. All of the presentations that were at this session were ones that had been heard by this group before. So, Laurie Orlando from Duke, a Disguster Family History Implementation Project, Dave Merazek from the Mayo Clinic, described his psychiatric pharmacogenomic project, and I talked about the Lynch Syndrome Implementation Project that we had at Intermountain Healthcare. In our session, we had about 70 attendees. There was excellent feedback, very good interactive questions and answers. I haven't seen the full evaluation from the meeting, but informally, the reports were that the session got very good marks, and there was good satisfaction. I also wanted to give you sort of my takeaways from the meeting as a whole, things that I noticed and that I thought would be relevant. I actually commented to the meeting organizers, and I was one of the people on the planning committee, so, and I'm, to my knowledge, I'm still on the planning committee, although after my comments, perhaps, that will be reassessed, but I thought that there was a real imbalance in terms of the actual study of the science of dissemination and implementation, which is really important, related to the actual presentation of successful projects in medical care for dissemination and implementation. So there was a lot of policy, there was a lot of other things of that nature, particularly in the keynotes, that, while interesting, I must admit, I was expecting much more, you know, many more presentations about the success of implementation and the strategies that were used that were successful, so that we could take those away. There was one notable exception to that, which is a colleague of Jeff Ginsberg from Duke, who gave a spectacular talk on the use of social media in research that was just unbelievable, and I think that's something that would be fascinating to have this group hear about, because it's, it really opened my eyes to what an untapped potential this has to facilitate our research, but in particular, and maybe this is something that we can tee up back to the clinic research interface group, because it was, it was fascinating to me, the current way that we do research and how we consent research almost never would accommodate social networking to really facilitate research because of the, of the restrictions, and the slide that was most telling was the randomized control trial that he had done, where he showed the intervention on one side using social media, and that stayed static and on the other side, during the course of the 18 months of the trial, he just in an animation ran through all of the updates to all the social media that had been taking place in that time, and it went on for two minutes, just this constant list that you couldn't even read because it was scrolling by so fast, and it shows us how rapidly adaptable social media are, and how we're completely incapable in a research setting where we have to fix things in cement to study them, so it raises some really interesting questions about how we can kind of reconcile those two worlds, so that's something that I thought was sort of the highlight of the meeting for me, and something that I'm interested in thinking a lot more about. The other thing related to imbalances when I actually they showed a slide to the planning committee, and as I actually looked at the names and the titles, which I hadn't before, out of the 20 on the planning committee, there were only two MDs, me being one of them, and again I think that may be contributing to some of the imbalance, and I pointed that out to the organizers as well. Now I think there is tremendous value to NHGRI and to our particular group to be able to get our work out in front of this type of audience and in this venue. So I have made recommendations to Terry and Eric that NHGRI continued to fund a workshop for the 2013 meeting. To my knowledge, there hasn't been an official decision as of yet, but I'm now putting it out into the public to really put a lot of pressure on them to do that, so for those of you who agree with me, then please harangue them at the break. And I think that this is the group that we would look to to say, you know, where are the presentations that we think are really exciting that show how this can be done that we can take into this venue. So I would really look at this group as being the opportunity to identify those great things we want to show off. Now one additional reminder since there's been a lot of talk about funding opportunities, and that is that the dissemination and implementation group does have a funding mechanism through the Common Fund using a PAR mechanism. And so if you go to NIH website, enter dissemination implementation, you'll see the three funding opportunities that they have. And I think that they're very open to the idea of being able to have projects in this space that would be available for funding. And I think they would look very different. So as opposed to, you know, competing with the usual suspects in the RFAs that we've just kind of heard about. In some ways, I think particularly if you have something that's very innovative that you think may not stand up as well against more established types of programs, this may be a mechanism to explore. And if any of you have any need any direction to that, just shoot me an email and I'll be happy to kind of point you in the direction for those. So that's really all I have to say. I'm happy to answer any questions about that. Sean. Well, this is maybe a question I should have asked Eric, but I woke up slowly this morning. But I think you might be a good person to comment on it as well. I was thinking back to those sort of, I don't know what you would call those scatter plots or something that showed for the heat map officially. Eric shaking his head. No, you don't like heat map. We'll have clarification of that in the final minutes. Good. And you know, at least the way I read it, whatever it was that the sort of sort of in 2020 where that really, you know, started to be some emphasis in that, you know, fifth domain. But it was just striking me as you were talking that, you know, the way this field is emerging, you know, there's already rapid, you know, uptake in sort of clinical use as well as, you know, reimbursement. And so, and, you know, kind of all these programs that are already taking the technology and implementing it and using it in clinical care. And it seems like maybe it's a little too slow to be thinking so not more seriously about, you know, the evaluating the effectiveness or whatever that fifth domain was called when you've kind of unleashed the monster, if you will, or whatever would be a bit more appropriate metaphor, you know, kind of it's happening now. So it seems like you're going to be, you know, six or eight years behind if the program, so I don't know if you have. Yeah, well, I'll make a couple of comments and I'm sure Eric will comment as well. I mean, the first thing I would say is that even though the bulk of the effort is represented, you know, towards the latter part of that 10 years, the reality is, is that there are represented efforts in that area that I think are reflecting early adopters and that type of thing. The second thing I would say, and I think this is what Eric was trying to say is that, you know, Eric did not come off the mountain with this on stone tablets, that this was the best shot based on the on the information from the meeting in terms of representing that. But this is a very dynamic thing. And if priorities need to be reorganized, based on what's actually happening, I think that the genome had they're not going to go back to that and say, Well, sorry, you know, we said that was 2019. And so we're not going to respond to the fact I don't think that their intent is to let the practice get out ahead of of what they're interested in doing. I think it's just it's a it's a reasonable reflection of what the thinking was two years ago. And I might my guess would be is that if you re represented that today, it would probably look somewhat different than that it is. So I don't know, Eric, do you want to comment? Well, I'm not sure I came down from a mountain. But if I did, I came with PowerPoint, not with stone tablets for sure. But I mean, I guess one of the things I said, I want people here to speak up because every time I hear somebody make a statement, like we're already doing it now, or it's already ready for comparative effectiveness investigations. There are usually plenty of people that speak up and say that's not true, that that you're overstating the current situation and and that you're being overly optimistic. I don't have anyone who wants to bite on that. But I mean, certainly, I hear plenty of lots of skepticism. If they're not in this room, I could name people who have lunch with the community skepticism about whether we really are here or now at that stage. That said, I'm open minded. I mean, and that's we but I but the notion that we are way behind on thinking about effectiveness evaluations of genomic medicine, I guess I can't believe we're way behind as a matter of whether whether the striking distance or not. I don't Jeff, do you want to comment? I would just say, Jeff Ginsburg, that if I understood Sean's comment, it's that there are places where clinicians are using genetic and genomic tools routinely. And can we find find those places and capture the data that would help us evaluate the evidence? I mean, as one as one strategy here. So we shouldn't ignore the fact that it's, you know, that some that the lion's share might happen 10 years from now, but in the in this in the small enclaves that are doing it today, let's take full advantage of that so that we understand how they've done it and whether it's valuable. And one of the questions I frequently get is the when the these examples, are they anecdotal? Are they truly clinical practice? Are they still within the realm of clinical research? And if they're still in the realm of clinical research, we're really in a situation to study their relative effectiveness. I mean, when what's that threshold? I mean, again, I hear these debates at many meetings. I'm just curious what your thoughts are on I mean, unless I'm unless I'm misinterpreting what I've heard some people describe, it seems like, you know, more and more clinical academic institutions are setting up, you know, genomics programs that are, you know, advertised in glossy brochures and, you know, are kind of luring folks in with the, you know, the sexy terms of personalized medicine. And, you know, some of those some of those clinical applications, I think are fairly well, you know, demonstrated a lot of it. They're pretty clear on those, you know, needs to be further evaluated. But I think your point about, you know, is it or is it not ready for comparative effectiveness research? Well, it may or may not be. But it certainly appears to be, you know, being actively and aggressively adopted and, and, you know, Joanne and Naomi can maybe speak to, you know, maybe Joanne particularly that, you know, the bills are certainly piling up whether or not the evidence is there. And so that would suggest that it probably is time to look at it from a clinical utility comparative effectiveness point of view in a more serious way. But, you know, that's Yeah, this is Joanne Armstrong from Aetna. Yeah, I would second that. I think the question is whether you're talking about, you know, the demonstration of effectiveness of genetics as a big field, or of course not, or these specific examples, some of these examples, you know, we see our own data, they are well integrated, the utilization is high. Some of them have some studies of effectiveness behind them, some of them don't. So, you know, to that density plot, I think there are some leading edge examples that it would be valuable to get the data if not on effectiveness of nothing else that it would drive some enthusiasm for broader expansion and the attention of organizations to pay attention to this field. So are we going to hear of the specific examples and some of the upcoming talks? Is that today? I mean, I'm just looking ahead. Well, I have some data on, yes, I do have some Aetna data on a number of things, including some of the technologies that are covered. It was quite amazing to me that the last time I updated two of our slots, two of the slides that I use on pharmacogenetics, the examples of what's covered. I think there were about six things on the slide. Today there are, you know, for today, I have two very dense slides that just look at the biomarkers. So there is a lot of activity and it's fascinating because you're the picture you showed of some people walking slowly and some sort of fast walking occurred to me that I was sort of somewhere between walking slowly and fast walking, as I was personally thinking about it. But when I put the slides together, it's like, it's definitely fast walking, not running, but it's here. So can I, without putting you on the spot, but is it possible for us to actually somehow see the data? I mean, is this data publicly available on the frequency in which genetic testing is being done within your respective companies? Is that something that we could share? Yes, I don't know if Reed Tuxin is here yet, but United just published a white paper, and it's odd for Edna to be talking about what United just published, where they look at and make available the utilization of genetics by condition. I have some of that data myself to show you also by population types of people getting it. There are lots of challenges in the data and I'll show that to you. And a lot of it is related to the stack coding so that, you know, when you look in a claim system to try to understand utilization and what tests are being used, now it's all, you know, the stacks. But that is changing in 2013. The molecular pathology codes will change so there'll be greater specificity. Some of them have changed today so we've changed the BRCA codes by themselves. And then once we have that, I think we're going to have a very good view of how much of it is being done, for what conditions, what specific tests are being used. And then you can use that for research purposes, for reimbursement purposes, a whole host of things. So that's happening. One of the reasons why it's so useful, I think, it's going to be so useful for us to know those specific examples, is to then trace, I think, one of, is to sort of trace back on, is it sort of knowledge that just sort of just came on the scene or is it knowledge that came on the scene 20 years ago now is just sort of getting to that stage? Because what we're trying to do is project things that are going on now in some of our discovery programs and some of our clinical exploratory program and then trying to imagine, are they going to sort of hit your list two years from now, you know, five years from now as a tenure. And again, it's all this just, if we knew that, we would be able to sort of design research programs to study it. And we just don't know how quickly we have to do that. Right, so where there's specific coding, you can do that. And there's specific coding for the archetypes and the BRCA's of the world, but for most of the other tests, there's not. So what I'm just saying, these codes will change in January 2013, is when the new coding system will be adopted. And I think that's going to give you a lot of transparency into what's going on. Do you have it by specialty? So I'm just going to, as part of the planning community, I'm just going to interrupt what is a great discussion, but premature, in the sense that I think we've already accomplished our first goal from the last meeting, which was to bring together people that actually understand from different perspectives to this group to be able to engender exactly this type of dialogue. And so I think that it will probably be better placed to hear some of the formal presentations and then react off of those, because I suspect that some of the questions that we have bubbling up are going to be answered in those presentations. So, but with a heavy editorial hand, I'll just do it. We're at the, about at the end of my time, I saw Irwin with a hand up and Pearl with a hand up. Pearl's okay. Irwin, do you have something specific not to get into the weeds, but broader related specifically to dissemination and implementation? Yes, I do. And so I'm particularly interested in your comments that about the impact of social media and, you know, very clearly from talking to some players in this field in New York, you know, this is an avalanche that's coming and that's sort of into the areas that are now termed like patients like me or patients like this and sharing data in a whole different way. However, the underlying commodity of all this this market is data and, you know, it's not a person's health or creation of knowledge and I think there may be a particular conflict that we need to deal with. I'm wondering whether this is something that could be taken up by the clinical and research interface or in some workgroup sooner rather than later because it is on the on the agenda of many discussions that we are having, you know, how to bring social media into into this space and it's coming certainly to genomic medicine sooner than we expect. Yeah, well I think that it's certainly something and I see Pearl shaking her head as the new chair of that group that I think that in our breakout tonight I hadn't thought about this until I got up her and started talking about it and said hey that would be a good idea so that's what usually happens to me. I don't take showers so I don't have any ideas there but which is why Heidi and moving away but yeah I think we will take that up and look at as to what we might be able to do in terms of perhaps exploring that maybe the first thing to do would be to do sort of an informing session to kind of maybe propose for genome 4 that we maybe have a little session on this and bring in some people that are really exploiting this so I think there's some things to talk about I agree with you and I'd like to see that happen.