 So this is the working part, not that the rest of it wasn't, but this is where we really want to take some of the ideas that have been developed through the talks and that we've had a little bit of time to discuss to kind of flesh out, go into more detail, and ultimately would love to be able to translate into sort of tangible actions. And so I'm going to be kind of leading this part. Gene is going to be taking some notes and also trying to keep track of the order of people who are talking. What I want to do is first present what I captured from the discussions to this point. And so these I've identified as key points and they are roughly rank ordered using the metric of how many questions were asked and how much discussion we had. So you can argue whether or not that's valid, but that's how I did it. So I'm at least transparent about my methodology. So the key points, number one, the role of guidelines or less evidence based pseudo guidelines, if you will, such as ACP best practice advice and other examples that we heard of. I heard the idea that we need to get away from this paradigm of whether or not we should test to assuming that the information is there, what would you do with it? The CPIC model and again others have talked about that particular model, but also the idea that we have to be sensitive to clinical scenarios, to clinical context, as was brought up by Ned reflecting the work that EGAP has done. Practitioners, we've heard look to their own specialty society for guidelines, but we've also heard about the opportunities that we may have when we get specialty societies to work together and that's going to be more fully explored in key point 10. And so the question that I posed is could there be some novel process that could overcome the parochial interests and policies of individual societies? And again that may or may not be within scope of what we think we can reasonably accomplish, but it was a question I thought it would be was worth putting up there. We talked a lot about evidentiary standards, this is something that comes back. I think we've heard about evidence at all four of the genomic medicine meetings to this point and I've expanded that a bit in collecting outcomes data to inform evidentiary gaps, which we'll also discuss in a bit later. So that's sort of the whole guideline point. The idea of focusing on the development of competencies as opposed to just trying to teach the knowledge. And I think one thing that I would identify as being potentially a very useful outcome of this meeting would be if we could synthesize the different surveys that were done and publish something that here across cutting issues, we have surveys from seven different professional societies and here are the five things that every single one of them identified. I think that would be extremely powerful when combined with some of the work that's been done through the Secretary's Advisory Committee on Genetics, Health and Society and their education publication, the SACDINX education publication. We've got a lot of this, but it just really hasn't been well pulled together and that would be a potential role, a tangible output, a white paper of some type that could come out of this group. And the idea that we have to pay attention both to physicians and to allied health professionals. We have to recognize that this needs to be bi-directional information flow. We've heard that from several different folks. We heard about the ASCO rapid learning system, the CRVRs intended to be used for this. But the idea that we need something related to a safe harbor or a trusted broker to manage this type of information, collection and sharing and that we really have to involve the patient perspective in this because ultimately if we don't capture what the patients are interested in, we will have missed a huge piece. Evidence, the idea that genomics is a tool, I love that. We've never done a RCT on creatinine-based dosing. I mean, I think in some ways that was a very interesting perspective that I hadn't heard before. Is RCT level evidence needed? The role of other types of evidence generation comparative effectiveness, pseudo-perspective trials. The fact again, relating back to what we talked about in number two, will have the data in hand. So it's not a testing paradigm, but it's how do we use data that we already have. And then what was related in Bob's presentation, the concern about perfect information versus good enough information. The 70% effectiveness is better than not using the information at all because we're waiting for 100% effectiveness. And I think that's a very practical, pragmatic argument that can be made. We heard about different tracks for genomic training to fill different needs that as much as it pains me as a dysmorphologist to say, not everybody needs to learn dysmorphology. The maintenance upgrading and sustainability of proposed resources, this is an ongoing issue that we create cool things, either through grant funding or something else, and it gets to the end of the funding and then it just kind of goes away. And we've had many examples of things disappearing, although through dint of effort we've had other things that have managed to find sustainability such as OMEAM and gene reviews and what is now transformed in the genetic testing registry. What are the incentives for the end users to actually learn about this? We heard about CME or its equivalence, maintenance of certification, reimbursement, credentialing, which I think was a really interesting concept to emerge and the liability issues. We heard about a lot of different materials that are available through a lot of different professional societies. Would it be possible to aggregate all of these materials in one place? At least those materials that are meant to be publicly consumable and G2C2 is being a potential place where this could be done. What can we do to increase the visibility of these resources? And David and I were talking at the break about how can we lower barriers to accessing these resources ideally within the context of care and a bridging technology right now might be using an app. So in other words, you can link up to date through a handheld device or something of that nature because right now we may not have access to it in the electronic health record or through clinical decision support. It's not where we ultimately want to be, but it's a bridging technology that can help lower barriers to accessing information that's of relevance. And then we heard about this concept of the gene proposed of a society of societies and in some ways that exists. I mean there is the American Council of Medical Specialties and other things but it hasn't really targeted some of the important concepts that came up today. One thing is done. So we have one tangible action item that we've already done which is professional society representation for the CRVR. I've declared that done and there's a sign-up sheet which is C. Aaron. So give Aaron your names if you want to participate and then we can say we've done one thing even before we all leave. But I think there's a recognition, as Bob Saul was saying, there are common and repetitive things that we all do and we all bitch about the same thing. It takes too long. It's too complicated. So can we in fact look at the things that we all do and that we're all trying to solve and in some ways create a place where we can solve them together so we don't have to come up with one-offs and issues that have come up are issues around direct to consumer, some of the pharmacogenomic issues and the guideline development. Again, whether or not that's something we'll feel competent to address here, I don't know. So those are sort of the ten, I didn't intend it to come out to be ten, it just sort of came out as ten. So this is not a letterman rip-off. So I guess at this point then what we'd like to do is open the floor for discussion. I would certainly entertain information about whether the prioritization is right or wrong, whether there are things that we completely missed that you think are important to represent on the list, enhancements or best of all practical suggestions or solutions for how we might move forward. A small addition to the number ten, it seems to me that one thing that I heard today is that the societies would benefit by sharing best practices. I mean, some of you have figured out some really interesting things and I wonder whether some sort of mechanism can be put in place to actually share best practices about guidance and about educational activities. I would also make a suggestion, Mark, that it might be best for we introverts in the room if you ask everybody around the table to sort of chip in because if we don't, the extroverts are going to take all the time. So it might be best to ask each of the professional societies to... Well, that wasn't something we talked about from the group, but the point is well taken. However, given the total number of people in the room, I'm not going to take that suggestion as a friendly amendment to what I'm going to do, but I will say if you tend to be a shy person, get some powder milk biscuits and turn your microphone on. That's a practical Midwestern solution to that problem. Joan, I think I saw your hand first. Yeah, so I think another important thing that can come out of the meeting today is that education occurs... All of this occurs implementation at the practice level, and so what works in Geisinger is not necessarily going to work in a community health center in the Bronx and what's going to happen in my internist's office in Frederick, Maryland. So all of the things that we've been talking about in the different educational materials, the approaches, the tools, the point of care versus more of a traditional CME approach, all of that is going to have to be implemented for different approaches at different settings. And I think as groups start to generate what I said earlier about practice-based evidence about what works at the practice level, of having a forum to share those lessons learned so we know why does a point of care tool work in Geisinger because you have all of these, versus why do we need a more traditional CME approach in another setting because they had a different problem with a different set of health care practitioners. So generating that information about the approaches that work in different settings in a forum for everybody to share that I think would really help advance the science a lot. Great, I like that idea, and I think the other thing to mention in relation to that is that there is a trans-NIH activity related to dissemination and implementation science. And these types of questions are scientific questions that can be approached through funding mechanisms through that organization. And there are a number of ICs that are contributors to that dissemination and implementation group. And as of this year, NHGRI is one of the ICs that is actually contributing to that effort. So I think adding engagement with dissemination and implementation activities either through NHGRI or through other mechanisms to reflect best practices would be a good suggestion. I want to make the point that it would be very helpful to make it easier to write guidelines across societies. So we actually wanted to do a guideline for pheochromocytoma and paraganglioma genetic testing and we wanted to try to do it with ASCO and ACGME since obviously it seemed to cover both. But we started with ACMG and then we were told that, you know, we couldn't go back and forth once one that started one place even though we hadn't done anything. We just wrote a proposal that we couldn't go to the other. It just became really difficult and we got sort of lost in a morass of trying to do it in more than one society. So I think that that would be really helpful to be able to do that with more facility. Yeah, so that would fall within the sort of the society, the society's idea that there might be ways to manage those types of issues because that's a recurring problem that we hear. So we have, I think we have Donna and then, Bill, did you have a comment? No, okay. And Pearl, how about Pearl was first then, Pearl and then Donna. Just to add to your number one on the guidelines, listening to the discussion on the table, I think we need to agree what we mean by guidelines and that I think I'd be talking best practice guidelines that thou should or that I should consider, that I shalt. I think the answer is yes. What I was trying to get at here was that there's a whole range of things that fall under the rubric of guidelines and we heard several examples of those and so I interpret this to mean everything that falls under some type of a guidance. Okay, but I just think we need to pay attention to the tip of that iceberg in terms of how it might push on coverage decision making as well as on liability for perhaps not doing it in certain settings and others. So I think there's a tip of that iceberg which carries some other baggage. Right, so what we could do, Gene, just to help me is under D, just include impact on reimbursement and impact on liability. One D, Donna. Just to build on the society of CITES, we're very enthusiastic about that approach and I think there will be great synergy. We'd also, I'll volunteer Bill and myself in terms of the HAACC guidelines development. We've just gone through a rigorous methodology summit that took a full year looking at the IOM recommendations and really looking at how we can move forward with guidelines and I think with the IOMs recommendations out there, if you want to call something a guideline building on what Pearl said, we really need to know what we're doing and I think the society of societies could create some kind of process and we'd be happy to lend our expertise to that. And I think also some of the stakeholders that I think will be important as we move forward and think about gathering evidence are the IT, the EMR and the health systems and probably the payers because right now we're working more on the scientific domain of the different phenotypic areas and I think we really will have to see how the EMR changes, how we can collect information, how biorepositories can change what we're doing and how payer systems may impact all of that. So I think having them at the table in our society of societies could really make something more comprehensive emerge from that. Thank you. To sort of pre-sage coming attractions, one of the report outs will be a report of a meeting that we had with engaging payers, with industry and research and others to accomplish that and we had a number of takeaways from that meeting but this would be something that we could definitely add to that list of things to consider and we had a lot of enthusiasm and willingness to participate from those folks. I would just add that there's some risk that we might duplicate efforts that have been undertaken already and it's natural that we would. A fair bit of this has been accomplished within societies because a guideline is not a guideline, it's not a guideline. When we started to write the cancer link we were immediately confronted by the level one, level two, level three evidence to no evidence at all and so we have used standards broadly from medicine to write guidelines, guidance, standards of practice, you know, typical care and then begin to feedback against them and benchmark and there are procedures even, I forget the name associated with the D, there's a procedure for basically taking minimal data sets and having groups of experts reach consensus, what's it called? Delphi, right. So I think all that has been somewhat done already. The other thing that I would just point out of societies, pragmatism and expense being what they are it didn't take us very long to start to vote formally within ASCO for example to endorse Ontario guidelines. Yeah. Because they did the work already, we look at them, done. Yeah. And so a lot of that process maybe one could very efficiently get through. Yeah, and I think the intent of that would not be to, as you say, you know, go back and do it all over again but to really assemble the best practices so you could envision in a society of societies that there would be a reconciliation group that would look at evidentiary ranking and that there would be another group that would look at methodologies to be employed where there's not certain levels of evidence or these types of things. The only point I'll just make in this discussion is it's not a static creation and one of the things that we will have to grapple with is how you provide sort of meaningful feedback against your guidelines, especially when they're not at the highest level of evidence. Right. Because you need to test them going forward to see if they're legitimate or not. This is real effort. Right. And that's the directional flow that we have to get the information back somehow. And that was also a topic that was discussed at the payer meeting which is the idea that you know, do, you know, payers have a stake in terms of improving care as well. So can we use novel payment methodologies and some of which have been employed, for instance, the CMS decision to do coverage with evidence development related to pharmacogenomic testing for warfarin to try and answer the question about whether you should do it or not. Now, you know, one could argue that that process didn't necessarily result in the best trial, but at least it's an honest effort to try and do those sorts of things. So yeah, I think that that's important. Rex. I'll just add to that that one of the things that's been explicit in all of the discussions of the, whatever we're calling it, CRVR right now is that evidence changes over time, right? And so we need to be able to understand how a variant that today doesn't meet a criteria might in a year and a half meet a different set of criteria. So there needs to be an explicit process built into whatever there is to make sure that there's a reasonable review of the evidence behind any given data, any given guideline because that is not a static thing itself. Yeah, my recollection was that a specific point was mentioned in the RFA that there has to be some attention to that very point, which again gets back to the getting information back out because the other issue we're going to have is that even if the world as a whole has decided that evidence is not sufficient to move into practice, there will be certain enthusiasts or early adopters that will move it into practice and if we can learn by that pilot experience then that will be and we can aggregate that information that would be useful. So I think I saw Bill and someone else on the side, but Bill go ahead. Along the same lines of guidelines and documents I would propose also putting in that same category appropriate use criteria and the reason for it that has a certain methodology and let me share that with you because I think it's very attractive. If a guideline is put only by geneticists to push a certain testing, whatever it is, there is apparent conflict because you're trying to push and you're the expert on it. The nice thing about the appropriate use criteria, they've been developed I think in 1999 by RAND and UCLA and then they used modified Delphi methodology. There is a technical panel let's say here, genetics expert but ultimately the scoring panel has multiple stakeholders, has clinicians, has experts in the field, et cetera, et cetera. I think that methodology lends itself to more scrutiny as well as more acceptance from the outside. Yes. The topic and I don't want to do that if there's still more comments on guidelines. No, I think that's fine. Okay, all right. I'm just going to go back a little bit to the genetics education track and one thing Mark you had mentioned was training educators, genetic educators possibly. Is that correct? I had mentioned the idea that perhaps another class of providers that has a certain level of genetics training but not to the level of a genetic counselor or a medical geneticist. Yeah, I propose that. And one thing I would, and I think we should definitely look at a lot of different possibilities and one thing I would also propose is to think about challenging the current program director there's an association of genetic counseling program directors and also a BGC and the new accreditation ACGC to also think about how we can train more genetic counselors if that's something we think is necessary. You know, Gail spoke to earlier about how residency programs and genetics aren't full but 100% of our slots and genetic counseling training programs are full with still highly qualified applicants that we can't get in, we can't fit into current training programs. So how can we expand that? What resources are necessary and maybe asking some of those questions might be worthwhile? Thank you. Yes, Gail. Just one comment on item. I'm sorry, Gene Jenkins. Just one item under two in terms of competencies. Just so you're aware there are nurse competencies. There are physician assistant competencies and the pharmacist are endorsing their competencies soon to be released. And then there's also nitchpeg.org which has general health care provider competencies listed as well. So those might be templates or ideas for consideration. Yeah, I think that's a really good point although and this will not shock Joan because you've heard me say it in a number of times that many of those are much more knowledge than they are competencies I think at the present time but I think revisiting that I'll let you have a rebuttal to that. No, I agree with you. I think that's where my comment about it happens the implementation piece. It's like in that particular setting what's the gap there and what's the skill that's needed to close that gap and the knowledge is only what supports it. And so I agree. I agree with you. Pearl. A comment and a question. This is on 1D. I would like that one a lot since that's what I was before. But collecting outcome data. Is there anything being done at a trans NIH level regarding the SBs? It's not just genetics that needs outcome data. And I fear that the way we're going with our sort of siloed electronic medical records, HIPAA, I mean there's so many anti-sharing situations going on whereas I think this is something to be I think good to hold hands on. Yeah, I'll refer to my colleagues at other institutes. I'm not aware of any efforts in that realm or any of you. Sounds like a good data science project. So what is a data science project? You've got the interim director sitting right next to you. I think it's the logistics of sharing. So I think it is the logistics of, I mean I think right now everybody is brother as a different electronic medical record system that they're maybe a common vendor, but we're all changing it for our own place which we're so unique, you know. And then I add to that also just issues of not only HIPAA, but a patchwork quill of state laws regarding what you can and can't share without specific consent. And yet we need outcome data. I would think every other area of medical research needs outcome data. So rather than us owning this, we're trying to find a rich partner. Yeah, and there's clearly there are other federal agencies. I mean the FDA is very interested in collecting post-market data because they recognize that the drug approval process does not generate adequate amounts of information to identify rare and significant medical side effects. The whole point I think to some degree of the Patient-Centered Outcomes Research Institute that was created as part of the Affordable Care Act is the idea that we have to be able to get at outcomes. HRQ has certainly done some work. So this is an area that a lot of people have been talking about and so in some ways that implies that the solutions are not readily apparent. And so the question then really comes to the scope. In other words, could we through the CRVR or some other mechanism actually address the delimited issue of collecting information relating to genetic variance in which case that would be a good thing. Recognizing we can't solve all of the problems and that's the thing I always get nervous about is that almost anything we talk about, whether it's privacy or discrimination or access, ultimately scales back to a problem inherent in our health care delivery system. And if we take that on then we will definitely not get anywhere. So I think that's the only tension that I would see is while there's opportunities for partnership there, we have to do it being cognizant of the fact that we ultimately could try and eat a whole elephant. Yeah, but one of the one of the whole issues I think of this big data initiative, the state of science initiative is there are technical tools that can be deployed to anonymize and make sure that to the extent that and policy tools can be applied to say you can't, you're not allowed to re-identify, you agree not to re-identify. So I think big data is only big data to the extent that it's not all sitting in separate silos. And so a federated approach to think about how to bring important key elements of data and integrate them I think is a important target for the big data initiative. Yeah. Good. Jeff. So one thing that I didn't hear mentioned today is the use of genetics as a training tool in the classroom. You know, it's still a handful of programs, but nursing, medical students, fellows and even postgraduate courses and I have used genetics as a means to try to entrain physicians and providers and, you know, what a genetic test really is. And I guess the question is, you know, is there an opportunity for us to learn from those efforts and maybe guide them a little bit or to understand where they might be useful. Maybe that comes under one of your educational initiatives or the Society of Societies or I don't know if any of the professional organizations have had direct contact with those or have a comment on it. Do you have a specific example that we could perhaps reference? Well, at Stanford there's a medical school, medical students are given the option to get their some SNPs used as part of their training. There's the BIDMC, I think pathology residents. Right. Of course that has also offered this at our... Which actually just, they were just awarded a large grant, I think, if I'm not mistaken to look at that more broadly across... But it will include the SNP testing from Navigenics, which is what they did for their residents paid for by the department. Okay. And I think Ohio State is also... There are several. These are ground up, obviously, initiatives aimed at training health professionals and I think it deserves at least a place on our agenda to understand and evaluate its usefulness or not. Or in some ways it's even a... In some ways it's a personalization. So in other words personal experience with genetic information. Yeah. Understanding what it means to you. Okay. Yes. Just one follow up comment to that. There was a session at the last ASHAG meeting just around that where a number of groups who have implemented this in their various medical schools had shared their experiences about the different approaches that they took and why. So that would be a place to start to sort of get that information. I want to maybe put a couple of people on the spot or you can decline to accept being put on the spot. But in the course of the meeting today there were some emails that were kind of flying around particularly from some of the NHGRI folks about certain things that were being discussed and it may or may not you may or may not feel comfortable sharing in this group some of the conversations about the education group at NHGRI and your reaction to what we've been talking about or the policy in your reaction to what we're talking about but if you have some things that you've heard that you would like to relate initiatives to or opportunities about I would certainly entertain those or you can say out of bounds. Well I'm not sure what you're talking about so maybe maybe my colleagues are aware. I guess one thing I would mention is that for example do we need to go to like Medicare and Medicaid and talk to them about genetics. For example a test came out at the RNA for 21 and Medicare has approved to do it. FDA hasn't and if I were to look at it seriously I have to say I have a hard time finding why they should but obviously these are providers of a large number of our population and I think that are they really educated to it and maybe certainly if a robust representative from this conglomerate today were to approach them I think it would be meaningful. Well actually I can tell you that we've had engagement with at least some representatives from CMS that attended actually one of these Genomic Medicine meetings and presented and also presented participated in the payer meeting where they talked about the coverage with evidence development so we have some engagement the challenge of course with dealing with something like CMS that one representative you know cannot the entire organization represent and so how that gets communicated back and how that filters down in terms of overall coverage policy and that is to some degree problematic but we certainly have reached out and engaged and we recognize that they do in fact provide coverage that ultimately could impact utilization of some of the things that we're talking about. Well I can just say as a I mean as a follow-up I did have a follow-up meeting with Well Point after our last payer meeting and they're actually very willing to continue to be engaged and actually provide data of a sort that I don't think we've had access to before in terms of how many cases they support and how much money they spend on genetic testing and a variety of other things which I think will be very useful as we go forward. And there have been other payers that have been willing to show us at least aggregate numbers such as United Health Care not an NHGRI. Well actually it was cosponsored I think with the CTMP where there was some their white paper on genetic utilization was presented. So we do have some good engagement I think they're interested I can tell you that their perspective is they're less interested in the evolutionary approach that we've talked about. They're really looking they recognize in terms of the utilization curve and the cost curve that they need something to dramatically alter the trajectory and in some ways they're saying if you can provide us with something that's going to dramatically alter as opposed to being one more thing that's added on. So that's the take away message there is don't be one more cool thing that's just going to add more costs and not improve outcomes. So I think that was their message to us is that you really have to think about how you're addressing the value equation. Yes. So this is sort of going back to the question you asked in HGRI about different projects that they are involved in and possible funding opportunities but I wanted to just point out and maybe some people saw this a couple of weeks ago the AMA announced that it would be funding 8 to 12 medical schools that are willing to submit applications and undergo a pretty extensive change in the way that or at least proposed pilot type changes in the way that medical education is undertaken and so I just wanted to point out the RFP is online if anybody is interested in seeing it and I would certainly encourage any of you who have that decision making power at a medical school to read through this RFP but one of the examples that is written here in the RFP about the types of innovations that the granting committee is going to be looking at says improvements and innovations in training related to a whole bunch of things and one of them is genomic health and so this is hopefully the fact that it is written into the RFP will encourage some of these medical schools to think about that and incorporate that into some of their proposals so I think I have nothing to do with the group that put out this RFP other than chatting with them in the halls every once in a while but I do talk with them and I hope that this will be something that's incorporated in many of the proposals that they end up getting. Great. Thank you. I might note that in terms of RFAs and other things that are pending we will have a discussion of the activities that we have. We thought we would focus on the professional societies today. Ned. So I don't know how far we were getting away from number one to the rest of the list but since it's still up there and it relates to evidentiary standards I think it is critical that we figure out a standard approach or framework to other evidentiary standards that could be used to inform clinical guidelines other than randomized controlled trial. Because that no matter what you do you introduce uncertainty or if you will you increase your risk of being wrong. So back to a phrase that was used earlier we can all agree on the facts but we take the same facts or the same evidence and can create really different professional guidelines that vary on this basis of when is evidence good enough to say go ahead and do it. So I think if we can admit that it might help structure the decision making around what evidence other than RCTs can be used to drive a you should do a type of guideline and just recognize that there's a risk of being wrong then a framework that says okay if we are wrong what is the potential harm out there. So if your risk of being wrong is moderate but your risk of doing harm is low you could actually deal with this particular approach reporting this result or acting on this issue and then fill in the evidence gap going forward. I think as I've talked to other people then you have to have the evidence the coverage with evidence deliver development discipline to say once we know something doesn't work we're going to stop paying for it we heard the digoxin example earlier we used a lot of digitalis before we actually did the RCTs and to be honest we used a lot of digitalis after we did the RCTs because the diffusion of information to not do something travels slowly as well so I think managing that piece is really important and then I always ask people who are doing guidelines to always think about the comparison with usual clinical care because we've developed the biochemical and the pathophysiologic pharmacologic approach to medicine over a number of years supported by science and the randomized control trial and while we're better in some areas than others we're actually pretty good in a lot of areas and so we should always be thinking about the marginal benefits what additional clinical health outcomes do we gain versus the marginal costs and risks and as long as we always keep those in mind I think we can create these slightly less guidelines with evidence development that were disciplined to fill in the gaps moving forward and improving science so I think that's the framework that the guidelines that could be existing between the group of professional groups should kind of look at in moving forward so to maybe put a different spin in terms of what it is you're saying the way I would capture that is to say we've got a number of things that we could potentially choose to do guidelines about if we had some sort of framework by which we could prioritize which things are more likely to be beneficial and less harmful using some other types of criteria that are currently used then we could prioritize creation of that and also prioritize what we really want to collect evidence around rather than letting it happen in a stochastic way and so whoever chooses to do something contribute evidence that's what we get but it may not be what we're particularly interested in I think that's good Alan I have two comments about surveys and guidelines I guess I thought the survey data that was presented today was really informative but on the other hand none of the surveys really presented any benchmarks to know what to compare this data to and I think that would be very important if a white paper is going to be written so that the data is interpretable to me it seemed like well yeah docs need more education in genetics but maybe docs need more education with regard to how to diagnose the thyroid nodule or something like that so I think we need that benchmark the second with getting to guidelines and surveys is I wonder whether guidelines drafted by a society of societies would be taken the same way by an individual member of a society in terms of how they would interpret those guidelines and potentially implement them we all tend to be married to our specific memberships and I'm just not sure that guidelines drafted by a conglomerate of societies would be interpreted the same way by physicians in the trenches who are actually going to decide whether they're going to implement or not that would be a good survey question to ask and I think that that's a fair point although I think inherent in the comments was that whatever this hypothetical process would be whatever societies contributed to it will ultimately then present that as this is our so there would be an endorsement process or something where you would each of the representative societies that participated in the creation of that guideline would say yes ACMG ACOG AHA we're all we all hold this as our guideline which is one of the reasons why it's such a problem to do joint guidelines because we have these processes that are very different but that was at least the way I was taking it but there would be another model which would be the idea that you'd have this this uber society that would create its own guidelines the individual societies could choose or to or not to endorse and I think in that case that question becomes particularly relevant it took about 30 years to agree on a diagnosis for gestational diabetes between the ADA so that's just one example yeah and it's usually not the big stuff that we disagree on it's usually the little stuff but it's that asymptote where it's trying to approach the data light where you have to throw more and more energy and you never really get there and so again in the quality improvement lexicon it's perfect being the enemy of good enough and as a result we just create more work and we have less product whereas we could probably do more good if we just gave up on some of the smaller stuff Mary? I guess to expand a little bit what's important is the problem what's the downside of implementing a guideline related also to our earlier conversations about we don't insist on having outcome data that dosing many drugs based on serum creatinine improves outcomes and we continue to apply this genetic exceptionalism to ourselves and identify those applications of genomic medicine and genetic testing where it's not worth spending our precious tax dollars that we're all fighting for to get our grant money on something that's more or less a no brainer and that we should also be willing to say sometimes we shouldn't collect outcome data because I believe collecting outcome data is one of the most complex exercises there is right I mean is this not what emerge spends all of its doing is figuring out how to take highly sophisticated people with electronic health records and getting useful information out of it and it's a huge effort from a lot of smart people so it's extremely expensive to collect outcome data which also means collecting all the treatment information data which is extremely complex in order to understand how to interpret your outcome data so a lot of times people throw up let's compare outcomes as if that's the easiest thing in the world to do it's more expensive than the most complex things to do so let's sometimes be satisfied with implementing and moving on and I think that you know in pharmacogenomics there are clear examples and you take a back of ear it's an adverse event it's highly predicted with a single snip you've got alternative medications you know you don't need to do an outcome study on that you just say don't give the people that have this snip a back of ear use another antiretroviral and we've had this conversation before the balance between adverse events and efficacy because in some of the conditions some of the drugs gene pairs we're talking about there's not only impact on increasing adverse events but the adverse event is a consequence also of a treatment target and so by reducing adverse events you might in fact also reduce efficacy and that's where I think you know measuring outcomes becomes we say we're only going to collect outcomes in this scenario we're not going to collect outcomes in these scenarios and that's I think it's back to what Ned was talking about in terms of defining that framework up front in terms of what it is you really need to answer the question what's the consequences of not giving someone a back of ear when you have a bunch of alternative medications it's extremely low and so you can tolerate being you know somewhat wrong even though Bill I think you were first and then Mike I just want to caution regarding guidelines of rediscovering the wheel a bit the reason for it is IOM just came out this past year with recommendations of how to even refine them further so I think this is really the guide for all of us where you see a lot of variability I would say is going beyond guidelines expert consensus documents appropriate news criteria position papers health policy papers regarding a certain issue here and there but I would recommend that we really uphold in the vast majority the IOM recommendations which are quite restrictive and if you look at our European colleagues I mean they look at us and you know wow you're quite restrictive going there but this is really the common nomenclature something meaningful by itself it has a certain methodology it's quite rigorous it has a systematic review it has so many other things that go into it so I would encourage this group to take this you know recommendation as really the recommendation for it right and I would just say that you know again I don't think we've been rigorous about the semantic use of the term guideline here I think we're using it much more generic sense I would be surprised as a guideline as defined by IOM I would completely agree with you but we have all of these other things that you know based on frameworks or whatever we may determine are more appropriate to use as opposed to a guideline in which case then we probably do have some creation to do in terms of saying well what would be the appropriate way to approach that so that would be the only comment I would make to clarify that so just to change the topic a bit could we discuss the societies like a fund of funds before I do that Mike did you have a comment specific to guidelines I didn't want to derail that yeah in the guideline area I think that's something that would be really useful to clinicians and a real need is if we extend Mary's CPIC model we are going to be faced with a situation where lots of people are going to have genetic results in patients that need to have them put into perspective Mark you've been working and a lot of people have on the idea of returning the incidental or secondary findings from genomes I mean this whole notion of what to do with a BRCA mutation and someone who has no family history and no prior probability if we could focus some of the energies of people in this room on what to do with results in those situations because that's going to be the real frontline battle that providers are going to have to face of what to do with this data okay thanks so now we'll come back maybe we should call it for those of us who are old enough we can call it the great society channel LBJ here sorry go ahead Bill I just want us to clarify because I don't know if this was a previous discussion or not regarding society of societies as to what do we mean by that and what are some of the you know guidelines for that concept and besides certainly solidifying the science some of the processes that we have together what do you guys have in mind well I think that the what I'm reflecting here is that this this concept sort of emerged from the presentations and from the discussion and so it's really more to represent sort of a strawman concept that has you know little if anything beneath it in terms of what it should really look like or what it should do and so it's really more of a trial balloon to say to people around the room is this a concept that has enough value to it that we should begin to drill down and explore what would be the conditions and what would be the work of this proposed society of societies one and number two is that really work that this group in the context of genomic implementation thinks would be valuable or would the output be in our summary we say this was a clear problem that was identified and we don't think it's our problem to fix but we would hold it up to the society representatives to perhaps take it further that's how I would characterize how it arose and what we're now kind of deciding what to do with so Mark let me take a crack at a little bit of that it does seem to me that it would function as a clearing house in a way just as today we've heard a lot of different approaches to similar problems a body like that might keep track of technological advances they might keep track of what's coming out of the clinical variant thing it might in fact ask professional societies or recommend to professional societies some of whose representatives sit on it that this seems like something that you ought to look into why don't you do it it seems to me for a society of societies or whatever you want to call it to impose itself on an existing professional society silly I mean I don't think anybody would want to do that but I do think I heard around this table today a lot of things that I had never heard of people doing sharing those best practices it seems to me would be a useful thing to do if that's the only thing that it does so anyway that's the general idea right yeah I'm not a fan of the term society of societies because I think it implies something that we're really not intending to imply here you know society of societies would suggest that there's some reach through to the individual members of that society and I don't think we're talking about here I think you know what we're really talking about and I think it really it grew out of the CRV I can never get the acronym quite right but out of the discussion that we should have a place where people would get together and coordinate and that's a very coordinating is a very different activity from implying something about society so I would say we should not use the term society societies and maybe talk about a coordinating or some or a coordinating committee perhaps okay I would go along with that I think either a coordinating group working group task force whichever way because you know society has other implications but I think the essence of what Jean what you just mentioned is really what came out loud today is there's so much to share and coordinate and synchronize among various societies Nancy I think you were next but you might want to call an advisory group I don't know but I think this also means you'd have to I mean I when I think about this for ACOG I mean it would mean that somebody would have to talk to some very high level people to even get them on board as opposed to going through our committees right I mean because I I don't know I guess I can just envision all the political ramifications of this so it's you know wonderful right as Yogi Berra once said in theory theory is better than practice and practice it ain't so this is something that is theoretically attractive but as you say the operationalizing it through the existing society structures is potentially problematic I mean I guess I would view it as something I mean I think it's a great idea I'm not saying it's not but I think this is about sort of advice and knowledge and sharing goals and stuff but I as opposed to any kind of society of societies but some sort of advisory group yeah I know I think we gotta get rid of that but somewhere where somebody goes to some very high level person to kind of bring that up we'll call it the coalition of the willing and assume the same success I mean all these have executive boards right it's an executive board issue really I think rather what would be very helpful for us to learn from the society members who are here some of whom are at very high levels is how you would want to interact with us and with the other groups in terms of either giving suggestions or recommendations to your membership collectively to us or to others we do have to be a little bit careful about establishing federal advisory groups which this would not be but it would be very helpful I like Jean's idea of maybe you know putting asking you to comment on what your group would like to do and how you'd like to be involved so maybe if one of you wants to Terry I would like to say one thing before we get probably worried about the names and what have you but I think it would be a mistake if we didn't whether it's these 10 points or something watered down or otherwise enhanced you know to ask all the societies to publish that page in all of their flagship journals I think that would have a tremendous effect must then as individual societies to move forward I certainly don't like another committee because committees have a life of their own with they don't achieve things and the famous quote is that you know very few people on the committee does anything but they often stop many people from doing anything and I always remember you know look back about 2,000 years ago a guy got together to think about he should go down and transform the spiritual system on earth then he got 12 disciples and we're wondering about ever since what's right or wrong so I don't think society should be good about it but I do think we should have something out in the journals and I think asking the people from the various societies what you can publish that one page would be good ammunition for all of us to use for our individual yes again I mean I understand some of the concerns but to me this seems relatively apolitical we frequently collaborate to get lots of things done and most of the larger societies and I'll speak for Asco would be very welcoming of somebody just saying here are the rules here's the playing ground and we would contribute to it and we would respond to it it's a whole lot better than everybody setting up a local shop to try to resolve the same problems again so I I don't think we'd have any hesitation at all about supporting this in whatever way we could I would say I wouldn't call to society societies because it's it's just a little working group okay so we have have Donna and I think Bill so I really won't get stuck on the name either but because I recognize there's a lot of juice in that conversation but from the perspective of the American Heart Association I think for me I'm still struggling with what the it is that we're trying to solve by all coming together so I'll try to articulate what I think it is and I think we came here to evaluate and assess the level of education needed to create a workforce in the health arena that can accommodate genomic medicine and the second piece is how we could move genomic medicine translatable down into the trenches where people are working so assuming those are two objectives and I could be wrong but assuming that I would think this group would want to come together and create one common educational platform targeted at the various health delivery systems that we have and that then we could also define what are the minimal pieces required to develop a guideline or a performance measure or something else that would allow us to move into space so that's what I think the it is and what we the American Heart Association would want to contribute to I think that's reasonable and again I think the the risk is to try and over define at a very granular level you know what that would be but you know keeping it a relatively higher concept which is to say these are things and we've heard in all the presentations from the different groups today things teed up in terms of you know we have to get our people ready you know for genetics and genomics and you know that the needs assessments kind of show the same thing so rather than do what we usually do which is we all go off and do our own thing can we in fact do that together achieve some efficiencies of scales and consistency but then let the you know the group you know in some ways actionable output related to that that's how I would kind of see it Wolfgang I think I was just thinking about that I mean thrown around and what we're trying to achieve so it's said genomics genetics genomics which is a discipline and then genomics medicine which enlarges this and I thought you know what is all similar or common to all these societies and what we want to do or genetics genomics but also informatics it's also ethics it's also economics etc so what has the tendency to expand the role of what one wants to do and then all of a sudden there are all these other stakeholders that do the same thing so I'm not clear now whether we're fighting for or you know activating for genomic medicine that means we want to change medicine as a whole whether we look specifically at genomics and some of the definitions are not clear in my mind anymore yeah well I think that's natural at this point because I think what we're really dealing with are you know some concepts that have been articulated but again those concepts in some ways are going to mean different things to different people and I don't think I can guarantee you having done a few of these before there were 80 people in the room we will not achieve consensus on what everything is to be done but I think if we can make the idea that there's a group of folks that are really activated and want to work together on this one of the tasks would be to define the scope of what it is that will be done I think that would be a reasonable output one of the things I was struck by is I listened to everyone speaking is that many of us have webinars or teaching courses online and just even for all the different people and having all those resources in one place yeah number nine here where again I think that that something that I would see as being you know very doable recognizing that not all the resources that are created within a professional society are meant or public but those that are it would seem that whether it's a repository of links or the materials themselves they're a relatively easy thing to do and that they're potentially could be resources within genome or within the NIH more broadly that could you know serve as the aggregator again that would be something that would seem to be very doable so it's good to highlight that we tend to like to focus on the really hard things and forget that sometimes are really easy things that we can that we can do quickly we heard from at least some of the ASCO and the AHA reps I think Bill maybe you might want to comment from the ACC we also have our pediatric friends I think still here yes and others so Bill why don't you go ahead yeah I like this forum I think this forum has shown us that all of us face challenges and the area of genomics and and there are tremendous opportunities that conceivably we can learn from each other I think Mark you you highlighted quite a few of the commonalities here and things so I think this forum should not be there only for one time and but from this meeting should come out some summary of at least the things that we've shared so going back to quite a few other surveys actually highlighted the opportunities and the challenges and I think this is the pathway in a way to try to improve that and it is education from from medical school if it is not on the curriculum and this is something that we could do something together to the training programs and and I believe also that education will always have different forms be it webinars CME et cetera because individuals interact and engage in different ways throughout but since each one of our specialties are dealing with disease entities that have some genetic basis some of them more highlighted than others some more mature from understanding pathophysiology et cetera and application and we're not able to really penetrate and affect that very well be it because of knowledge or who to refer or how to embed individuals and also payment reform and CMS I really think here there is an opportunity to highlight with some commonalities and how to address this now each one of us in their own milieu will have to decide what to do because the diseases are different for pathology for cardiovascular disease is different but there is enough commonalities at least to come up with something that this is on the radar screen it is an issue and these are at least some solutions to take us there everything is evolving and our ways of educating and engaging individuals is involving and believe it or not patients need to get involved here we have a website for patients and we're going to put some genetic material where it makes sense for when there is discussion between the healthcare professional and the patient that can come to the radar screen Bob Obviously I cannot speak for the American Academy of Pediatrics I'm merely a representative but I think I can speak to the fact that we very much welcome collaboration both ways the ability for somebody like me to come to this meeting and the ability for other members of other professional organizations in the government to come to our meetings and have representatives from the NIH and other folks like that that come to our committee on genetics in addition to the representative from the American College of OPGYN so we're very much a part of that at the same time I think the American Academy of Pediatrics like most professional organizations that deals with a specific constituency is very protective of that constituency and wants to make sure they're doing the right thing by that constituency because that's where their money comes from is those folks so it has to be deal with and appropriately respond to those individuals but a couple things that I've been trying to take things in here and I had mentioned that the American Academy of Pediatrics has a strategic planning initiative on epigenetics it sees that as a significant tie-in to some of the other projects that are going on for example early brain and childhood development those issues are critically important in terms of I don't know that we can if you will screw up the expression of genes without modifying them because of epigenetic factors prenatally and postnatally in terms of maternal and child abuse or whatever that we now recognize that that's a significant factor that needs to be dealt with and the other thing is that we really haven't mentioned here but one of the things that came clear to me at our colloquium was that we really do not we do a fairly abysmal job I think in terms of looking at the continuum of genetics over the lifespan we have our own little we have prenatal we have pediatrics we have adult we don't communicate very well over the lifespan of that I mean so because so many things that happen prenatally and early postnatally are critical to the disease susceptibilities that adults have but we have not done very well with that so that's just another issue that I would encourage us to look at to figure out how as the professional societies and these organizations work together to figure out the continuum of disease across the lifespan not just whether you're an OBGYN a pediatrician or an internal medicine or a gerontologist and I think the thing I would add on to that is that if you look at the you know where the potential value of doing a genome or an exome would be it is in some way through reuse of the information so whenever that genome is done it's done for a specific purpose but there are going to be other purposes that will come on down the road and so if you've done it and you can make the information persist some way and you can define as Ned was saying earlier the clinical context under which you would pull certain parts of that information in then you have something where if you invest your thousand dollars in your genome you can go over an entire lifespan as long as we can understand the appropriate context with which to use the information and I think you know that's slightly different than the point that you were making but it doesn't how we need to have continuity and handoffs and of course it also comes back to the idea of that ultimately as Wolfgang was saying there are going to be some huge informatics issues that are underlying that which is where is it stored how is it transmitted what parts are exposed to the electronic health record under what circumstances again within a disintegrated healthcare delivery system is very problematic so there's plenty of grist for the mill there but I think it's and one of the things I didn't emphasize is obviously the Genetics and Primary Care Institute is meant to be an example and get collaboration from other primary care societies like the American Academy Pediatrics or excuse me a family practice American College of Physicians arguably we're concentrating right now on genetics because that's the group we can or pediatrics because that's the group we can have the most impact on and understand the most but we would hope that these these outcomes would be generalizable to other specialties Thank you Mike is the official I'm going to put you on the spot I'm the representative of the College of Medical Genetics and Genomics at least since Bruce has left and you've been uncharacteristically quiet today so I didn't know if you had any specific comments or observations in light of Terry's request to kind of put everybody on the spot probably nothing terribly useful I mean I there is no organization of specialties in the country I would say it's actually worse right now than it has been since I started in this there's two different organizations who try to umbrella the specialties and they're at odds now so how we pull this together is going to be interesting but I do think it's increasingly important that we do it you know we're moving from this time where we think about the diseases in the six person model and we're moving to variant first which means you know I really sort of dread the day our guideline about incidental findings comes out because these are going to be asymptomatic people associated with specialists in other areas of medicine who don't know we're doing that and you know one day we're going to put out a guideline that says you know there's cancers there's cardiomyopathies if we find this variant then we should tell this patient and begin to act on prevention and reduction of severity so I do think that there's a lot of there's a huge communication problem that's coming in a variant first world where the specialties aren't talking to one another yet genetics is going to impose you know a fair bit of itself on other specialties and they're not going to see it coming because we have no good networks in which we communicate among each other so that's another good potential functionality to add to this concept which would be inter-specialty communication to kind of keep people up to speed just as we did today of what it is they're actually we're actually doing so I would say that then I would say you know my dread in this is that we end up perceive the way the genome institute did for a while which was you had the technology in NHGRI all the other institutes had the diseases so to go after a disease you had to partner up and you brought the least amount of money to the partnership because you were the smallest institute and were the smallest specialty so we you know as much as we have brought expertise and would like to bring it to these other activities we are careful in that we have little resource aside from knowledge to bring to the table I think there is you know a point of hope here where you said you know there's no sort of umbrella organization to that and while that is a challenge we have here an area that we can work around that I think is exciting the public is interested in it clinicians are interested in it it's very cool and if we can't galvanize the societies around this I mean you know the hard institute galvanize people around hypertension is really important but it's not nearly as exciting as genomics and genetics sorry I'm getting hypertension just thinking about it yeah that's right I agree to an extent you know my other worry really is that a lot of people representing the society has talked about the benefits we're going to get from integration of clinical decision support into electronic environments you know I don't know where that's going to come from right now you know an EMR CDS company talks to the guy down the street because I know that disease and lo and behold there's you know a clinical decision support tool built into somebody's EMR that do you want them available to you at popular rates so yeah I mean it's a much bigger problem than that industry has even thought about at this point about really how do we do this because this you know this is across all specialties when we start developing this kind of clinical decision support that guides all practitioners happen in the care of a patient Howard back in the early 90s or maybe it was late 80s when the some of the big journals decided to come up with a Vancouver agreement and the approach for publishing it wasn't all journals it was just some and it wasn't any autonomy issues it just agreed on a format and journals that weren't at the table some of them agreed to go after it too and I think they did come up with pharmacogenetic guidelines in the last six months they're influencing rheumatology but they're not here in the room but if the groups that are here come up with an approach for what is useful and what's not including beyond genetics you know why is amiodarone part of warfarin dosing never been a trial and yet it's a factor in influencing the dose selection we need to be able to identify those societies that want to adopt that approach can others can do their own thing but at least there will be a way forward and I think that we'll get a lot of frustration we have around the room we're tired of guidelines that you kind of missed the boat and few of them will miss the boat some will still miss the boat but we don't want to be able to identify those societies and umbrella grouping a group et cetera and I'm not a member of any society that's present represented here and maybe you have more comments to what I'm going to say but what I was very encouraged by recently was the work of the ABIM foundation societies and they reached consensus on what to advise clinicians on certain tests that are overutilized and you know if you have a patient with XYZ do not do back pain do not do a chest x-ray until six weeks after presentation things like that now there must have been a process of getting these folks around the table and getting them to talk et cetera with this and whether that could be something one could look into well certainly we have one example of how to do it which is extant and we're currently participating in I don't know Mike were you involved at all with the ABIMF choosing wisely okay okay we believe you so I'm going to try to wrestle the moderator slot back from Mark I'm really getting to the end of this segment and I wonder we are moving then forward to the next steps segment right so we'll wind up right so let me because I think we're you know I think if anything the things that I've heard here would alter the order in the sense that the thing that ultimately sort of got represented here at the bottom clearly so that will be something that will move up up the chain the process that we envision going forward will be that we will be you know taking this taking the notes that Gina's been taking synthesize that into sort of a version too of what we heard and will be that will be available to be sent around and will ultimately the basis for a summary of the meeting so we have another crack outside of the walls of this meeting room to provide input based on reflection and that but I guess at this point what we'd like to do the things that I've heard that I think we can tangibly say are next steps and people can disagree but certainly the pursuing how we might be able to aggregate materials in one place and I think to some degree that would also include professional societies that are represented here saying we have this stuff and we would like this to be a part of it that could be communicated to Jean and Jean would probably send out an email invitation to that if there are specific suggestions beyond G2C2 where that might occur that can be something that you could suggest or that the internal working group could look at I think clearly we're going to the planning group is going to be discussing how we might be able to reconvene probably let me just step back the genomic medicine group will continue on and will continue to explore other topics but I think what we've heard here is that there's an enthusiasm for a group specifically around professional societies to also have an opportunity to convene and have some ongoing meetings and so that'll be something we're going to need to talk about at the planning group level how we might operationalize that to happen and can again if you have specific ideas about how that might happen I'd like to solicit that and the sense I'm getting is that a lot of the discussions relating to this in some ways are now going to be a subset of that group discussion that these are an important output of professional societies but what we're really talking about now is how we might step back and look at some frameworks that could potentially inform selection or other criteria that would be something so are there other tangible action steps from the discussion that people would want to put forward that we should have is takeaways Yes, Siri So I guess I might suggest that we plan to have a follow up probably a conference call or whatever of the professional society representatives either those of you who were fortunate enough to come to DFW or someone else from your society if you're not available as being at least the first group of the coalition of the willing and really try to define what are the things that we would like to get done in the next three to six months or so and I see heads nodding around the room and I also am quite sensitive to Nancy's comment that we absolutely have to have a leadership of the various groups on board with this and some we do and some we don't but what's the best way to convince them of that it might be here are these five big societies that want to be part of this don't you want to be part too but that may not be as convincing as really having kind of an agenda for this is what this will do for you and this is what we'd like to get from you And I think one thing I would add to that and I've heard a couple of you as you're thinking through what this might be sort of articulate some ideas of what you heard and what you think for those of you that would be willing to kind of put that down and writing and say this is what we would be interested in engaging around and sending that to Jean Whatever you want to call it so that it's not too prescriptive but so that we can think about how we best can use the resources in the room and the resources of NHGR and the NIH even to think about how do we feed this pipeline with useful data that can be used to better improve the quality of healthcare through genomics and I think that's been an important goal so I just want to make sure that that that also stays on right Yeah, no it clearly is something that we've probably spent 65% of the time and discussions on that issue so I think it clearly has risen to the surface as being something critically important I think the other thing that we could put on the table for this potential group is whether this would be the group that would be represented in the CRVR in terms of the concept of the of the external professional society guidance to that specific project so I think that would be one way to kind of pull that together and I don't know that we've I know Terry sort of grimacing there I'm sorry I can't play poker for very clear reasons but one issue we do have to be aware of is that in the solicitation we asked the applicants to define that and while I suspect they would be thrilled if they knew that we had done some of the groundwork for them I don't think it would be up to us to say if this is the group that will work with the CRVR it would be sort of the other way around but that's a sort of a small issue But we also know it's a cooperative agreement non-dodd-wink-wink say no more It is and I think it would be very important to have input from these societies participating and Erin you may want to comment as well that the coordinating group or professional society group I forgot what we called it in CRVR would be doing so it's a perfect consensus you want to comment? No that's absolutely true and the only thing to add is that we'll probably be seeking input from other stakeholders as well so we'll just have to figure out the right approach to collecting all that information and we can work closely with with Jean and then the grantee once they're awarded to figure out what to do and then later to get a sense of which organizations are interested so we can hit the ground running and work with the grantee moving forward And it really did seem that there are many issues that are much bigger that are affecting the societies than just our little issue of what's clinically actionable Great I just want to make a comment that Nitchpeg was originally founded around the idea of not duplicating materials around developing educational materials for healthcare provider educators healthcare providers across all disciplines and it's sort of interesting because the issue of the of the clinical guidelines very early on in the history of Nitchpeg they decided not to do guidelines because all of the representatives that's the function of the societies and so it's changed but there are lots of healthcare provider organizations who are a part of Nitchpeg who are not represented here today and so I'm sure that we could we'd be happy to disseminate the information around this or bring other organizations to bear on the discussion and there's already a cadre of individuals and a lot of different societies who are thinking about these issues Thank you, Joan Very good it's an extraordinarily productive day so I'd like you all to give yourselves a hand for all the hard work you did recognizing that there are some folks that have earlier flights tomorrow we're scheduled till 5.30 and so I'll give the group a choice I have one brief item that I am going to bring up which is an opportunity that we discuss on our planning committee tomorrow but then if people wanted to adjourn at this point we can do that and then we would resume tomorrow probably not spending much time on the recap since we essentially just did the recap but move into the presentations as listed alternatively Derek has said he could give an update on the payers meeting this afternoon so how many would just assume we wrap up in five minutes how many would like to hear the payers perspective alright we will wrap up in five minutes so the you can come back tomorrow those of you want to hear it you're welcome to come back tomorrow so the one quick question before you move on is it possible to email this slide to the people these slides yes and actually what I think what we will do we will take the information from the discussion okay and use that to kind of reorder and reorganize and then we'll send out that version too at which point if we don't have something right then please comment back and we'll fix it before it goes final so the opportunity we have that I mentioned in the planning committee call is that the American Journal of Medical Genetics has a seminar series seminar that is an issue devoted to a specific topic and I've edited a couple of these in the past and I was talking with the editor and mentioned that we have this genomic medicine implementation group and proposed the idea that we could do an issue of papers on implementation projects that groups around the table are doing so this would be an opportunity to basically put a number of things that we're doing into a published form through a peer-reviewed journal but would have the visibility of having a single topic issue that I would be willing to edit and so I just wanted to get a sense from the group whether that's something you would like to pursue is there anybody that is violently opposed other than well I'm not sure Dan is violently opposed he just wants us to make sure we say something and he's in Belgium so who cares anybody that has objections to moving forward with that or discussion questions can I see a rough show of hands of people who have a paper in the works that they would like to consider submitting to such an issue one two implementation three four okay we've got an issue there so I will I will ask those of you who are interested to if you could submit just a title and a brief summary of what it is you would like to say then I can put together a draft table of contents proposed that to the editor I think it will be accepted and we would be looking at the January 2014 seminars issue meaning that we would probably be looking to have papers by September so great I will be in communication with the group we are adjourned thank you very much I'm sorry I didn't one issue I was supposed to announce for the periodontal microbiome group you'll be meeting in the breakout room which is room D just down the hall here the cancer working group is not going to meet but the periodontal group is next door right and it's equipped with a spit sink so you're in good shape there so