Well, thanks so much for this wonderful presentation. And I have a question for Dr. Hussain. When the joint guidelines have been published by two journals, how are they going to be referenced in the future publications? Are they going to be assigned the same PubMed ID? Is only one journal going to be referenced? Or is there a mechanism for that? That's always tricky. It depends on the author and which journal they decide to reference. But there are no, as I'm aware, set criteria. That's also negotiated when the joint guideline is commissioned. OK. Great. Thanks. I have a question for Dr. Cooper. So the very involved financial analysis that you showed, especially the sensitivity analysis with the probabilistic model, is that for just the technical appraisal? Or is that for the guidance? Or is that for both? That's for both. And it is also for the guidance, particularly where we carry out a detailed health economic analysis on specific questions. There isn't always health economic analysis on all of the recommendations. We just don't have the bandwidth to do that. But critical recommendations, there would be an HE analysis. And that would include a PSA. Dr. Bassam Assaf from Moline, Illinois. I have a question to Dr. Hussain. Can you just give a summary about the main guidelines that have been done and what the AES is contemplating for guidelines in the near future? So that at least in the feedback, we may like to suggest some topics that are not being thought of. No, absolutely. The one major guideline that AES produced a number of years ago was an early and established status epilepticus. It is now dated. And there's certainly more data out there. That is one of the guidelines that AES is working with Neurocritical Care Society on. There are two other guidelines that AES is working on, electrocorticography and epilepsy surgery. Both are combined guidelines. Electrocorticography is with the American Clinical Neurophysiology Society. And epilepsy surgery is with the Congress of Neurologic Surgeons. Outside of that, there is a fourth guideline that is about to be published that is a joint guideline between several societies, AES, AN. It's a maternal fetal medicine society. And that is epilepsy and pregnancy guideline that is about to be hopefully published. So that is the extent of the AES guidelines that are currently. Oh, no, I take that back. Indeed, there's one more. Infantile epilepsy is another guideline that we're working on. And that is about to, that's moving along. That probably will be available end of next year. Thank you. So you mentioned, maybe, Emily, you want to comment on members' suggestions. Yes, yes. We really would like to better develop the mechanism for member suggestions to see what's out there. So the kind of other document types that we discussed briefly, this is still being worked out a bit. We plan to have a proposal form that members can submit on the website to say, this is the problem that I think needs to be addressed. There will be a little bit about what kind of evidence is out there. Are you willing to be part of the work group? And what do you think the best type of document for this is? Although, that'll kind of be looked at in terms of the available evidence. So that does not exist yet. We hope that it will soon. Hi, my name is Rishi. I'm in Los Angeles. I had a question. I don't know if it's perfectly relevant to this talk. But it has to do with a coding guideline in sleep-deprived EEGs, 95819 is what we were told to code. However, I came to learn that they don't have to actually fall asleep to get a 95819. That was different than what I was trained in my residency. And so I did this search. And it says, as long as they have an intention to sleep, then how do you prove intention to sleep? And it got into this wormhole of trying to figure out how I could justify this so I don't under an audit or anything like that. So I'm still in this process. I got led to the AMA. But then you have to pay this fee to even talk to this AMA counselor on CPT coding. And so I'm wondering, the wording is a little bit vague. And the guideline that currently I'm looking at and my company is looking at is the AAN guideline. And I don't think it's deemed as a guideline, but it's a guideline sheet. And that's what we're going through. So how do I go about, say, modifying the wording so that it's more clear, or at least getting a consensus statement on what most people do? Because I've talked to some of epileptologists, neurologists, and they all do different things. So you raise an interesting point. Anyone else want to have any? I think we should direct this to Paul, who has absolutely nothing to do with this. So I have absolutely nothing to do with any of that. But what I would say is that within the development of the guideline, there should be a stakeholder consultation, a widespread one, on the draft guideline. And that would be the point at which relevant external experts, and many of the stakeholder comments that we get at NICE come from industry, would point out potential inconsistencies in terminology used or question exactly what we meant by a particular recommendation. So doing it after the horse has bolted is probably too late. What should have happened is that somebody within industry should have identified that this was an issue during a stakeholder consultation process. Yeah, and I guess my easy answer to your question, since you started off by saying you were from Los Angeles, is ask Mark Noor. But separate from that is what you're talking about, unfortunately, has nothing to do with evidence-based guidelines as we have talked about today. What you're referring to is sort of what the AMA and the RUC and those commissions put together. Now, they are not evidence-based, but the evidence that they come up with is sort of what practitioners do and how much time they spent on something. And so the reason why you're asking this question is because, presumably, the RVU value or the reimbursement of a sleep-deprived is going to be different than a regular EEG. And so those sort of issues are decided in a completely different manner than an evidence-based guideline. And so slightly different, but I would direct you towards the NAC or one of those organizations. But again, is that a issue for membership? If this is an issue for membership, we hope to ultimately have a process whereby membership can say, these are issues that we deal with on a daily basis. What do you, American Epilepsy Society, recommend? Perhaps we'll take it up, perhaps we won't, but that's sort of what. Yeah. And I wonder if the Practice Management Committee would say, hey, this is something we are aware of. We're dealing with it, but that's excellent. Excellent question. Thank you. So you said Mark, Neur, and then NAAC, was that? NAEC, the National Association for Epilepsy Centers. OK, thank you so much. Dr. Parjan. Hi, Emily. So I had actually an eye-opening experience. I participated in AAN guideline subcommittee, and we were writing guidelines for anti-epileptic drug withdrawal. Didn't find great evidence in anything. And so it was interesting to me trying to write the guidelines, and there was a lot of probably, may, no significant difference. But when you're even writing this out for people, and how do you use this so it's actually useful for anyone, it's very discombobulated, and very circuitous, and noncommittal. I felt like we were like lawyers trying to not get sued by somebody. How do you actually, I mean, if you were a lay person looking at this as a patient, or maybe even just a general neurologist, or a primary care doctor, I find that guidelines are very hard, even as a specialist who's been practicing for years and years and trained at a great epilepsy center, worked at some of the best centers in the country. They're hard for me to read. I find the way they're written, it's very difficult for someone who maybe doesn't have that level of training to read, because they're so noncommittal. Because a lot of times, there isn't great evidence. It would be great if we had a pop-out box here that says, OK, here's some highlighted points besides the abstract, which also is written in a weird, discombobulated way. And it's possible that what you read, or I guess what you're writing, is the full document, maybe 70 pages. There should be an executive summary. That's still 50 pages, but it's still very long. Part of the implementation, I know AEN actually has a framework for this. OK, we're going to have a one-page patient and primary care handout. Or maybe they didn't then, but they do now, I think. They didn't. I mean, this was a couple of years ago. But I think that would be great if we started doing that, too. If I perhaps could come in, because all the nice guidance comes with two products. There's a patient information leaflet, which is a simple, patient-accessible document. There's also a pathway, which is a sort of clickable, web-based SIST, where you can work your way through decision trees as to what to do under certain circumstances. I think I need that, too. That's a really important point. So perhaps, Karen, you want to comment. I mean, you went through a very nice sort of way that a practitioner might assess a guideline. In your experience, are practitioners actually doing that, or they look at sort of the bottom line and say, oh, AN said give him a drug, so let's just give him a drug? Well, that's a very good question. But I don't know that I can represent all practitioners in terms of what they do. I mean, certainly I know when I'm looking at a guideline, I do tend to focus in on the question in particular that I have, as opposed to kind of reading through the entire document and all of the recommendations. Yeah. Hi, my name is Parth. Just a quick background, 20 years in medical device, almost all of it in radiation oncology, turned entrepreneur in neurology in the last three years. So I'm still learning how to spell EEG, so forgive me on some of these questions. I'm struggling a bit, like on which society do I go to if I want to write a guideline on a topic for childhood son's epilepsy? Am I going to AES? Am I going to CNS? Am I going to AAN? I mean, there's several societies focusing on epilepsies here. Sure. So a couple of different things. So if you want to write a guideline, any society that you go to will ask you for your conflicts of interest. And if you represent a medical device or a treatment option for the condition for which you are wanting a guideline, then you might request that guideline, but you likely will not be asked to participate in it because of the COI. Yeah, I'm not wanting a guideline. I mean, I'm not wanting to write a guideline. I'm wanting to find out which society will write a guideline. Sure. And so, you know, obviously we're biased, and we are the American Epilepsy Society. Yes, you ought to ask the American Epilepsy Society, but certainly a childhood absence epilepsy guideline would reasonably appropriately be a joint guideline between maybe the Child Neurology Society and the American Epilepsy Society. And that's why, for example, the epilepsy surgery guideline is a joint guideline between the Congress for Neurologic Surgeons and the American Epilepsy Society. So you could approach a society, and again, it depends on sort of what the bandwidth is of the society to produce a guideline on a topic that they feel is contemporary, is important, has to be addressed. Okay. Kind of the reason for my question is, is I saw there was a guideline for first unprovoked seizure in adults. I'm just kind of curious as to why children weren't considered, because you have another guideline that considers treatment for adults and children, but why is first unprovoked seizure in adult more focused? And there was nothing on children. So a lot of the studies that we look at, like recurrence risk and things like that, so a lot of the studies will break down participants by adults and children. Also in adults, we're always thinking about driving, and they're a little bit different. The children will have caregivers. They'll probably have someone around. But mostly the evidence tends to break down at least into pediatric and adult seizure recurrence risk. Okay. And the other thing I'll add to that is, in the future, or at least now, there is a push towards guidelines including pediatrics and adults. Okay, that's good to know. And I guess just my last question is, you talked about the guidelines that are currently being worked on. I guess how many guidelines are in the queue for review, I mean, are being proposed that are not yet reviewed? And then secondly, is there a way to look at which guideline proposals have been submitted and rejected and why they were rejected so we don't repeat and waste your time and waste our time in submitting these proposals? Sorry, there's a two-fold. Yeah, to answer your second question, not at this time. But one of our goals for the next few months is to revamp the kind of proposal submission process. And I can imagine that there could be, probably not the full proposal, but maybe topics that were deferred or delayed. Yeah. Not at this time. Oh, and guidelines in the queue, yeah. So it's an evolving process. I know the AAN also, you know, it's not kind of a first come, first serve, but it's what guidelines do we think are a priority as new opportunities come in? So to briefly answer your question, we don't have any that we haven't started, but we know we're going to do. So that's the bottom line. Why is that the case? Unlike the AAN that has a hopper full of guidelines and they pick two every year. And that's because we're relatively new in this guideline arena. And so we know we've got four guidelines that are ongoing right now. That's what we can handle. We know they're not gonna be complete in the next six months. And so once we get to near completion, then we start to look at our pool. Okay, that makes sense. Thank you. I did want to make one comment to the previous question, and that is sort of the vagueness of guidelines and sort of this, maybe this, maybe that. And what I wanted to get to is a little bit esoteric. All societies have something known as DNO insurance and other types of insurance that ensures the society and officers. One important component of the DNO insurance is protection against individuals or companies that may sue the society based on what they say in their guidelines. And so you may very well say that this is not an appropriate or use this. And someone who makes that is unhappy because you've said use this. And so those things have to be balanced. And I'm not saying that there are no recommendations to be made, but those are the kind of things that potentially lead to these watered-down guidelines. Again, not justifying any of it, but certainly suggesting why it seems like a lowered-up statement. And if I could, perhaps. Sometimes I guess the wording is confusing. Yeah. When you're trying to figure out if you were a layperson or. Sure. And in the UK, NICE is regularly subject to legal challenge. It's a statutory body, so we have some authority, or they have authority. I'm not an employee, as I say. But many of it, particularly the technology appraisals relating to whether or not the health service is going to implement a new product, is commonly subject to legal challenge from the pharma companies. Kind of like what Emily had brought up in her talk with the treatment for the antibiotics. Yes, you should do it short or long. But even that is kind of reassuring as a clinician to say, oh, I'm not wrong if I choose one of these things, is the positive way to look at it and say, okay, someone looked at all the evidence and I can do whatever I think is right. The cautionary trail is the fact that we spend all this time and money making the guidelines, and we as clinicians say, we still have to think about the patient and the discussion in the office, that shared decision issue as well. But there's also the insurance people out there who are saying, well, we're gonna grant you this or not grant you this based on that guideline that's in paper and published wherever. Absolutely, and all of those things have to be factored in, and certainly one of the reasons for guidelines is third-party payers justifying something. I mean, it goes both ways, is saying that these are legitimate reasons to do X, Y, and Z, and so now you have to pay for it. But on the other hand, just like you're going to approve a drug for focal unaware seizures, but not for focal aware seizures, because it's not in the label. If I may, so in, there we go. Ooh, that's very loud, sorry. If I may, so in my experience as a clinical pharmacist when interacting with insurance companies, oftentimes, in my experience, what has been most successful is illustrating the differences that my patient might have or our patients might have as compared to the guidelines and their recommendations, and then finding, if it's available, evidence to support that. And so it kind of goes back to the thing I alluded to at the end that we all know is, we still have to use them as guidelines. They're not a textbook, and I think when you have that conversation, if we have the time, with somebody in the insurance company that is usually clinically minded or trained, and that might take the first call, the second call, the third call, or the fourth call, unless you're me and then my name is known and on speed dial, but it's that they look beyond kind of the, what's the word I'm looking for? The checklist that they have. Oh no, I can't do this. And that does make it frustrating for us as clinicians. But as we're assessing that, it's really using the guidelines as a guide and saying, my patient doesn't fit this, and advocating for them, so. I'd say we get that problem an awful lot in PEDS because there's significantly fewer trials. But I will say that I recently got insurance to pay for Valtoco for my child because I said I was on this committee. And we were working on a guideline for status epilepticus. And she's like, okay. So Joy, that could be our advertisement for people to join the committee. If you need to make prior auth calls, then it helps to be on this committee. I'll declare that as a conflict of interest now. Well thank you, go ahead, sorry. Thank you all so much for coming. This is really great, and thanks for the questions. Thank you.

guidelines

epilepsy

stakeholder consultation

financial analyses

medical evidence

transparency