Myriad Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit https://myriad.com/live/ for a list of dates, times, and subjects.
0:00:13.3 Dr. Thomas Slavin: Welcome. This episode of Inside the Genome is a recent recording of Myriad Oncology Live, a webinar hosted by me, Dr. Thomas Slavin, Chief Medical Officer for Myriad Genetics. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, please visit Myriad Live for a list of dates, times, and subjects. I look forward to exploring the world of genetics with you all.
0:00:41.1 DS: Well, welcome everyone to Myriad Live. So excited to have you here today. It sounds like at least some people's first time, so thank you. Hopefully folks can see my screen here. Let me know if not, but if this is your first time, you're in for a treat. So this is Myriad Live. It's just an absolute open door, you know, theme-based educational webinar. The goal is to be, even though it starts with Myriad, we try to be unbranded. We try to just make sure everyone learns, has an open door to medical affairs and some of the scientists here, and we teach everyone, and it's a good collegial environment. Stop any time and ask any question you want. We have Shelly, as well, on. Thank you, Shelly. If you don't feel comfortable, we do record these. If you don't feel comfortable, you know, talking on them, we put them on Inside the Genome, which I'll show you in a second, so people can listen to them later. But if you don't feel comfortable asking a question, definitely just put it in the chat or send it to Shelly on the side and we'll make sure it gets addressed. They are theme-based, but if you have a burning question that's outside of what we're talking about, feel free to add it, and we'll see if we can address it. But, oh, it looks like we just, yeah, they updated the page yesterday, so great.
0:02:06.0 DS: So today we're talking about, they took a bunch down from January and February, which were old. So we have Terry Sarantou, and I'll, Terry, you can introduce yourself in a second, but that's what we're going to be talking about today, hospital accreditation and genetics. It's kind of a popular demand. This has come up a few times. We have Edie Smith on as well. Edie, I'll have you introduce yourself. Thank you so much for coming on, and two just absolute experts. Terry has some slides to show, which will help orient everyone. And we have later this month, I can name what month it is, so it's colon cancer awareness month. I kind of jumped the gun.
0:02:48.3 DS: But colon cancer awareness month, so I wanted to do something around colon cancer, asked for Sonya Cooper, and she was willing to come on, which is fantastic. She had a really interesting systematic review that was published on BRCA and 2 carriers risk for colon cancer. This has always been like a hot topic. So I thought it'd be a fun topic for colorectal cancer awareness month, just to understand, you know, how to think about colorectal cancer risks in BRCA and 2 mutation carriers. And then we're going to come in April, we're going to be talking about equitable expanded carrier screening. We're going to have Gabriel Lazarin and Katie Johansen Taber on. So they are two experts in this field, absolutely, for expanded carrier screening.
0:03:42.5 DS: So that's in prenatal diagnostic testing, you know, thinking about mother and father being carriers for conditions in the fetus and child, you know, a lot of times these are autosomal recessive conditions. So we're going to address those. And we have been posting these and we have a few more we're going to be posting in April. And we try to do these roughly every two weeks. And we do post all of these up on Inside the Genome. So Inside the Genome is a podcast, but we also post these on them. So more of the webinar format. Anything that doesn't start with Myriad Live is just me talking with someone about a specific topic. And then if it says Myriad Live, it's from these webinars. So you see, there's plenty, plenty, plenty of content up there. It's really a lot. So there's tons of good education up there. Feel free to listen to it. I will also note, before I forget that here, for those that can see, we just put in this new signup. So thank you, Regan, for helping with the signup. If you want to just get notified as we post these, you see, we kind of are constantly posting these Myriad Live. So if you want to get notified of a new posting that comes up, just fill your name out here...
0:05:03.6 DS: And then we'll put you on the public invite when we set the date and time and everything. And then it can just pre-populate your calendar. That's been a request from a lot of people like, yeah, I like coming to these, but I don't know when they are and everything else. At worst, they're always up on the Myriad Live website. All right. So that's my housekeeping for today. Well, let's get back to Terry and Edie. So Terry, I don't know if you want to introduce yourself. You are an expert in this field, and we are so honored to have you on. But tell the audience a little bit about yourself.
0:05:39.7 Terry Sarantou: Thank you, TJ. Thank you for the opportunity to be here. I appreciate it. I met you several months ago, and I'm honored to have the time to spend with you today. So I just recently retired from surgery. I'm a professor of surgical oncology. I've spent almost all of my career in Charlotte, North Carolina at Atrium Health. The scope of my practice was general surgical oncology, but since 2008, I transitioned mainly to breast, melanoma, and endocrine care. I became involved in the NAPBC. This is the accreditation body for breast cancer through the American College of Surgeons. It's one of the quality programs through the American College of Surgeons, which is the Commission on Cancer and the NAPBC and the rectal program and the genetics program and what have you. And I became a surveyor in 2009. The NAPBC initially started around 2007 and their first surveys were done of accrediting breast programs in 2008. So I was early on in the survey process. I continue and remain as a surveyor. The survey process entails traveling to hospitals and spending the day with the staff, reviewing about 30 charts and going through an application process. And through that, I've made so many friends and traveled all over the US as well as internationally and accredited centers internationally also, which has been fun.
0:06:58.8 TS: I've served on numerous committees as well as the board and was responsible for writing the standards up until this most recent edition and have contributed to them now also. So thanks for that opportunity and happy to engage and answer questions later on. And certainly I have a few slides, but they're really meant as an introduction and hopefully as a segue to some great questions and conversations.
0:07:21.4 DS: Yeah, absolutely. Thank you so much. And Edie, if you want to, and I don't know, Terry, have you ever met Edie?
0:07:30.7 TS: I don't know if I have.
0:07:33.2 DS: Edie brings a lot of expertise to this.
0:07:36.9 Edie Smith: We probably have. We probably crossed paths 'cause we have a...
0:07:37.0 TS: I'm sure we have.
0:07:38.5 ES: A similar passion for the same subject matter. So my name is Edie Smith. I'm an MSL on the women's health side of Myriad. And I retired from clinical practice about five years ago. I spent the last half of my practice in high-risk breast cancer risk assessment. And I am very passionate about genetic certification and accreditation and I am board certified in genetics. I also hold the CGRA genetic certification through NCBC and have been involved in genetics credentialing and nursing for a number of years. So, very happy to be here and so nice to meet you, Terry, and can't wait to hear your presentation.
0:08:26.1 DS: Yeah, yeah. No, thanks, Edie, for coming on. Edie is just an expert that is in our backyard here. It's fantastic. She can help round out if there's other genetic questions that come up about credentialing. I know a bit about this world as well, but definitely not as much as Edie. But Terry, let's talk about NAPBC because I think that's what is probably very interesting to a lot of people on here just because it's so crucial to making sure that we have a high level of care in breast centers.
0:09:00.8 TS: Great. Well, thank you. And so I look forward to engaging, especially around genetics. I've had a lot of interest in that. That's been a challenging standard, Edie, in the sense of some really just confusion that's somewhat been created by ourselves. And I think we can do a better job moving forward. And I look forward to your input with helping us. So this first slide is kind of to give TJ a little bit of a rib. I was listening to your recent podcast while I was strolling in the neighborhood. And I think you were describing a lot of snow and bad weather, TJ. I sort of put this slide up. I was able to visit Puerto Rico. I actually did a survey there a few years back, but I was visiting another friend that lives there. And so while we were sort of traveling the island, he took me to this eco attraction, which is in the west coast of Puerto Rico. And it's these hypersaline lagoons; I don't know how well you can see it. And they're modified for salt production and the water from the sea is controlled and it's evaporated and salt is produced, but there's brine shrimp in this water with the salt. And it helps with the production of the salt and is one factor for the reddish color of the flats.
0:10:10.5 TS: So depending on the time of day that you're there, it was kind of a cloudy day, but you can really see some pink water there. So in honor of breast cancer awareness, I just thought I'd show this. And then just to kind of give you a hard time for the cold weather, I hope it's a little bit better where you are now too.
0:10:30.0 DS: Yeah, [0:10:30.1] ____ we have have been getting some interesting weather last few weeks. Hopefully it starts going towards, I don't know if the groundhog, I don't know what the groundhog said this year, but hopefully it gets to spring pretty quickly.
0:10:41.9 TS: Very well, very well. But I'd encourage you if you're in Puerto Rico to visit those salt flats, it's very interesting. And the area around it is a great place to go on a good hike. So many will ask why do we need an NAPBC? And obviously we'll talk a little bit about that and some of the origins of the NAPBC and some of the quality that led to the thinking of the NAPBC. And so, and again, how was the idea of the NAPBC conceived and why was it necessary for a breast accreditation and should there be other accreditations? And so that was a question that was often noted earlier. And part of it is, is that obviously breast is oftentimes perhaps maybe the number one cancer diagnosis in many hospitals across the US, or at least in the top five. And because of that, and more so also because of really the significant changes in knowledge that we're seeing in those that care for breast cancer, it appeared that really an accreditation program, some type of organization is really necessary because it was identified there was moderate disparities in care, depending on where you live with breast.
0:11:50.4 TS: And so, and we didn't know if it would morph into others. I mean, we have quality programs now for rectal and we have quality programs for geriatric medicine. I don't think that we're looking at, say an accreditation body for all cancers, because we do have the Commission on Cancer as well as other standards organizations, such as the NCBC. So, you know, one of the reasons was national recognition and promotion. Obviously that's important and many facilities will become accredited as part of that. Obviously it's important that they be recognized and that there's promotion and many want to use the logo in itself. And it certainly promotes the accreditation process. We also have seen that quality evaluation is evolving to the norm and really the quality movement is what led to the NAPBC. And we'll go through a little bit of just a very brief history of the quality movement and how the NAPBC as well as other organizations adopted that. We have to remember that the NAPBC does, writes the standards, but does not necessarily... The guidelines themselves were a guidelines based organization. And so there are multiple members that sit on the board of the NAPBC, you know, from the genetic society, from the medical society, surgical societies, radiation oncology, as well as survivorship and exercise and what have you.
0:13:12.6 TS: And so those guidelines are produced by those organizations and the NAPBC uses those guidelines. So we're in an evidence-based or guideline-based organization. We don't write particular guidelines. And so we're a multidisciplinary group of disease experts. Certainly we feel that we're really the group to set the standards for breast care, not the government or payers or others. And as we've seen over the past, say 30 years, accreditation has really become the vehicle with which to measure and assess quality. And whether accreditation will continue to be that vehicle or whether there'll be other norms or other standards that move forward, I think we'll just have to wait and see. In terms of quality management, I think it's easy to argue that in these 23 years of the 21st century, there's been more emphasis on quality and performance measurement than all the centuries combined in the past. And so, and really how do you measure quality? And that's always been the key in terms of how do you really measure quality? We have to understand that quality care that's received by patients varies by geography. I mean, we know that depending on where you live in the world itself, the quality of care may differ. It certainly can vary by institution. And you'll see, I was looking at the recent Newsweek rankings in hospitals, there's rankings in cancer care and whatever.
0:14:36.6 TS: And so there's quality that varies in institution, qualities in patient characteristics that need to be reconciled. Everyone's different, everyone's an individual itself, and there are also qualities in care providers. We know that there's two principle variations in the dimensions of quality care, and this is access and effectiveness of which was described for many years, patients having access and having effective care. But now that translates into disparities and inequities. Thirty years ago or so, the Institute of Medicine identified gaps in care. And these gaps were broken down into six aims for the healthcare system for quality and value. And again, the identification was is that care should be safe. We take some of that for granted now and we know that there's particular issues, but again, care should be safe, it should be effective and that's important. It should be patient-centered. And I think we're seeing a very nice movement towards more of emphasizing the patient journey and maybe not so much the provider journey of how the care is centered. It needs to be timely. And some of the process started because there were very large gaps in time, maybe say in the 1970s and 1980s, in terms of patients undergoing breast imaging and then getting care.
0:15:57.5 TS: And then those time gaps improved, but now we're starting to see some of those again as there's a new standard now, which is looking at patients should be undergoing, say, surgery, if that's their first method of care within 60 days of diagnosis. And we're seeing that many hospital systems are struggling with that timeframe and really how does that translate into morbidity and potentially mortality. Surgery should be, I mean, not surgery, excuse me, care should be efficient and obviously it should be equitable. For those of you that aren't as old as I am, I do remember the Deming principles. Deming was a researcher who actually was credited with working with the auto industry, with the Japanese auto industry, and then bringing some of what he learned over to the American auto industry. But he also worked with healthcare too. And so he had five principles that he advocated in improving healthcare. One was that quality improvement is the science of process management. So we saw him be one of the first to describe [0:17:01.1] ____ all these release process and structure in medicine. Certainly he may not have said this, but adopted it. If you cannot measure it, you certainly can improve it. And I'll show you a slide at the end that may refute a little bit of that.
0:17:14.0 TS: Managed care means managing the process of care. And you have to remember after much of what Deming was describing in the 1970s, 1980s, there was the managed care movement. The right data at the right time in the right hands, obviously that's important. And you want to engage the smart cogs of healthcare. Donabedian was a researcher at the University of Michigan in the 1960s. And what he advocated was, was moving away from the unstructured peer review method of quality back at that time. And it still exists today, but there really weren't tumor boards or whatever in that situation. And so most of quality was seen through the peer review method, which was really the morbidity and mortality conference. And I think we can all understand those of us that have attended those conferences, while there is quality that's described there, it may not necessarily be the most efficient method. So he advocated moving more towards an outcome-driven process. And he described three aspects. There were structure indicators. So structure indicators were related to the organization of the healthcare system. So examples of that are navigation, what we use today with coordination of care and scheduling, survivorship care plans are structure indicators, as well as a tumor board. And so again, NAPBC is a result of that with tumor boards. Then he described process indicators. These are related to the way care is given and measure what's done often in comparison with local guidelines.
0:18:46.2 TS: So these are metrics where you compare your program with national metrics. So one is say the National Quality Forum. Those are metrics that, time to care or time to treatment in the sense of those patients that have breast cancer, they should have a prescribed treatment, say, of chemotherapy or endocrine therapy within a prescribed period of time or radiation therapy. The process indicators are expressed as a percentage and based on a calculated field. And then lastly he described outcome indicators. These measure the results of given care and they're difficult to define because there're survival or post-operative complications and you cross cut say even with prescribing narcotics or types of medications and care. But that's where what we are at this point is that we're looking mainly at outcome indicators. Then we saw morphing into patient reported outcomes of which we're discussing now and patient reported experiences. We have what's called value-based care and value-based care is healthcare spending shifting to payments based on quality. And there's been some interesting articles just in the last month in the New England Journal of Medicine as well as the Journal of the American Medical Association questioning really the value that we've achieved over the past years with some of our programs. And I think it's good to have this re-evaluation to question that to make sure that we're on the right track. We're...
0:20:09.8 DS: And a quick question.
0:20:11.1 TS: Go ahead.
0:20:11.2 DS: I mean, this is 20 years now since I've been in medical school and I feel like a lot of these conversations were the same back then. And it's interesting that even though there's, and I would say honestly from my perspective the last few years value-based care started coming more, but it's interesting that it's just taken so long to start to really gain traction and things. I don't know if you have any comments on that from your experience, but it's just...
0:20:35.9 TS: I think it's just complicated. And now, you know, are we overburdening care providers in the sense of inputting information and have we sort of lost sight of really where that value is, but we haven't, you know, necessarily seen the cost savings that we thought. We have some safety measurements. I think care is better at this point, but it hasn't always translated in... Is that possibly due to significant hospital integration and with the thought that hospital integration would lead to improved quality and it maybe has not. The American Board of Medicine described the Choosing Wisely campaign and this is where suggestions were made in terms of de-escalating, say, surgical procedures such as a sentinel lymph node procedure in a patient over the age of 70 where it may not impact long-term care or whether a particular imaging should be ordered and in other avenues too. And then [0:21:26.0] ____ Curie, who was a researcher in the 1990s, he was championing auditing and peer comparison and using risk-adjusted analytics with the American College of Surgeons and the VA.
0:21:40.9 TS: And then that led to what's called NSQIP, the National Surgical Quality Improvement Program. And that program itself is kind of what sort of crystallized the movement towards being endorsed by the Commission on Cancer and moving away from structure and process to more outcome indicators. And so that then led to the formation of the NAPBC, the American Society of Breast Surgeons Mastery Program, the National Consortium of Breast Centers, certainly with their metrics itself and as others. And so we were somewhat charged as a result of the NSQIP program and some of these quality historical indicators itself of moving forward with the NAPBC. Sorry about that. Okay. So we saw that breast centers then started to come together. We really don't know how many breast centers there are in the United States. You can extrapolate. There are almost 1500 Commission on Cancer approved programs that are accredited, but there are about 600 breast programs at this point. And I don't really know how many breast centers there are, but I think that's going to be about a static number from what we can see. So as a result of that, breast centers started to come together.
0:22:57.1 TS: And so obviously there's some definitions of really what the components of a breast center are. This is a screenshot of a chapter I wrote in a breast cancer global quality care textbook. And certainly we described in our chapter really what we felt were the components of a breast center. Obviously there needed to be administrative buy-in, that there was a small leadership team and really it's really a small leadership team. We found that initially everyone wanted to be inclusive. And as everyone knows, if you have very large teams, then it's really hard to get things accomplished. And so we recommend a smaller leadership team with the authority to direct actions. Certainly it needs to be multidisciplinary. And really what we're looking for is really what's the process, what's the structure, how are patients referred, what's the care plan itself? And we all do multidisciplinary care, but it's really more so, what is that structure and process? There need to be regular multidisciplinary conferences such as tumor boards, which we're accustomed to now. And certainly we are seeing a movement away from in-person tumor boards to hybrid tumor boards.
0:24:01.8 TS: And we're even seeing increased attendance as a result of that. Really there needs to be a set of approved treatment guidelines. And these are the standards such as what the NAPBC has built in these guidelines on treatment schemes that guide the initial approach for each unique clinical case. A database is helpful. Not all programs have that, but we do know that capturing data is important and key. We need to maintain our equipment and especially now with again changes in care, having the latest equipment is certainly helpful. Quality improvement programs are important too. And I think the American College of Surgeons has really identified that they need and we need to help our programs really identify what a quality program or quality improvement is in terms of plan, do, study, and act. Much of what we have right now is mainly education or benchmarking. And I think the American College of Surgeons is taking the lead now in developing some of these quality initiatives that many programs can use themselves and we can actually input data. And I'm seeing more success in that than programs developing their own programs, which they don't really necessarily understand as they move forward.
0:25:15.8 TS: And so I'm happy that the American College of Surgeons now has identified and has a new set and a new part of it, a subcommittee in terms of quality in terms of the quality improvement programs. Clinical research is important. And again, community outreach, really where does your center fit into the community? I know that you may do a screening program, but when we will go and either do a virtual or an in-person survey, it's really not so much the tour of taking us to the radiology department or meeting with the genetics professionals. It's more so really how does your program impact the community and what are you doing for the community itself? And that's really what we're looking for. We've seen a shift in breast care. Obviously in the 1980s, we saw the development of multidisciplinary breast clinics. This is where patients were seen by multiple members of the care team in one setting. This is certainly a one-day setting where patients were in the office perhaps four to six hours and seeing. And the question then became, is it really, was it efficient for patients and the care team? Obviously many of these multidisciplinary clinics were first established in academic medical centers or community-based programs, but feedback from patients were that there was lower patient satisfaction.
0:26:36.2 TS: Even provider efficiency was questioned and patients would report back that they really obtained too much information in one setting and patients reported conflicting information actually. Again, this was, the thought about this was moving away from the silos that had been created in the 1970s and '80s of seeing a surgeon and then two weeks later seeing a medical internist or a medical oncologist and then not having communication because there really was no electronic medical record. And you'd be asking, well, what did Dr. So-and-so say that you should do or whatever? And then this moved into the multidisciplinary clinics. But then what we found was is that patients really weren't as satisfied as well as providers. They didn't feel it was an efficient use of their care. Now, some programs still use this today and they feel it's really very well and it works well for them. But other programs are sort of moving to more of this team-based approach in near but separate settings. It's using the multidisciplinary conference to actually discuss patients rather than having two separate conferences, one in the multidisciplinary clinic and a separate one for tumor board.
0:27:39.4 TS: It's called sort of a just-in-time model where patients are seen very efficiently within just a few days itself. And really, I'd recommend that if you haven't in your center, just do a patient roadmap and just see the journey that the patients are and where they interact with others and then I think you can get a better idea of the timing and really how the interaction works in a multidisciplinary fashion. So again, the benefits of accreditation is it provides a model. And again, many find the model useful. The manual itself is downloaded and the structure itself. It ensures multidisciplinary and integration and comprehensive breast care. It offers a method for internal and external assessment of your breast center performance. And again, it showcases national recognition as having met the performance measures as well as public promotion. This is the components. This is more of something that I'm personally interested in. I review many charts and I've seen many different ways of narrative dictation and how the information is recorded by the physicians. And we also have to remember now that our patients are accessing those clinical documents themselves. And so obviously what should be included in an ideal, say, template for a history and physical for a team that's seeing patients with breast cancer is that there should be some mention of the imaging review.
0:29:04.1 TS: There should be a mention of the pathology report and really the pathology report should be provided to the patient themselves. It should be documented in the note that you provided a copy of the report to the patient. There should be a clinical working stage that should be recorded and there should be a discussion of surgical treatment options. We're not looking for a long dissertation. I mean, I've seen clinical documents that say surgery Monday, no other documentation and others that are three pages, single space type that are more like a PhD dissertation. We don't really look for that. But there should be mentions of that, you know, this patient will be subjected to surgery, that there are options, that you discuss the options, that radiation is an option, chemotherapy, endocrine therapy, fertility preservation and what. And so these really should be included. This started by me when I was dictating before the electronic medical record is that I wouldn't forget to include all of this in my notes. So I would carry little index cards with me and have them strategically placed in stations where I'd pick up the phone and do a dictation. And so I didn't want to miss a few things. And so again, an ideal history and physical and template can include this.
0:30:20.7 DS: [0:30:20.7] ____ How do you forget any of those?
0:30:24.1 TS: What's that? Exactly. So, exactly so. And again, you know, including genetics, including plastic surgeries, second opinions, clinical trials, and really now it's important that you document that lifestyle modifications are discussed, you know, BMI perhaps, tobacco cessation, exercise. And so we're even seeing now with the new standards that there's significant emphasis on that as opposed to, say, the standard imaging review and pathology and what have you.
0:30:57.5 DS: And is this on the initial HPI and maybe every couple of years or is... Yeah.
0:31:04.6 TS: Well, ideally that, you know, many look at this and they seem overwhelmed by it, but if you can design a template where you can just cut and paste, I think that's easiest for what we recommend. So, and as we, as your notes are carried forward, it allows you a method to remember when you're looking through the notes, because much of what's in the electronic medical record is if you've seen as vaccination status and what, and you're looking through the EMR and there's just so much information that's not very helpful. So obviously a chronology of really when the patient had their initial imaging, to biopsy, to treatment, whatever is helpful. And then again, in the discussion section, you can go through all of this and update things. And I think it's an easy method of really understanding where your patients have been and where they're going. And again, this evolved through me reading hundreds, thousands of charts and seeing really best practices moving forward. And that's how I put this slide together for the NAPBC and how we've moved it forward. Obviously everyone can modify it, and this is just a suggestion, not a requirement or a standard.
0:32:14.5 DS: Yeah, that's impressive. Let's pause there for a second, Terry. Let's see if our audience has any questions out there. I mean, you know, with the chat, I saw Lynette looks like you were one of the first centers, Ochsner. I don't know if you want to [0:32:28.1] ____ relay your experience a little bit if you're on.
0:32:32.7 Lynette: Sure. Sorry, you caught me off guard there, TJ. Yeah, we were involved in one of the first accredited breast centers in the Gulf South. And I know from firsthand experience that the accreditation process really drove our institution to integrate more, to have that more visible, and also highlighted our interdisciplinary approach, which we already had in place, but it really emphasized the importance of continuing that and growing that, especially when you think about nurse navigation and survivorship programs. And it really just, from a nursing perspective, an advanced practice perspective, it really provided comprehensive care that our cancer patients were lacking in certain ways, especially when you think about the adjuvant therapies and lifestyle modifications. And I just really think it's a great program to emphasize the importance of that in oncology care.
0:33:37.0 DS: Yeah, absolutely.
0:33:38.7 Monique: And I'll echo that too, because as I'm looking at this list, sorry, this is Monique jumping in. I'm looking at this list, and after having just been a part of redefining the nurse navigation or the navigation exam that NCBC offers, so many of these things are on that list of things that were covered on that exam. And it makes me think, wow, this is the type of list that really gave rise to the nurse navigation positions at these centers.
0:34:10.5 DS: Yeah, no, thanks, Monique. Good insight.
0:34:14.3 TS: We're very thankful. I think that had it not been, say, for the Commission on Cancer and the NAPBC, and certainly the NCBC, I'm on a committee, and so I think they complement each other very well. But I certainly think with the NAPBC and the COC taking the stand about, say, genetics, and we can question some of the issues as a result of the standard, but and then also really survivorship care plans. I don't think that we'd be where we are today in survivorship care planning without having a standard. And so I give credit, and I also give much credit for reevaluating that standard and adopting it and changing it also. And I'm really excited that the NAPBC is moving forward in a patient-centered direction with the new standards. Ochsner was a fun survey. We came down and did that survey. I don't remember. Was it 2018 maybe or 2019? I think it was 2018, something like that. So it was a great program and we enjoyed doing the survey.
0:35:16.0 Lynette: Yeah, and I will add to that. As far as the survivorship aspect, it really did push our institution to recognize the importance of that and the value that it brings to our patients over time. A lot of the patients were followed in... With our oncologists for a short period of time, but we know that their needs continue beyond that. And it really did prompt recognition and value and importance that nurses and APPs provide in that aspect of care. And like I said, I think it's a great thing for patients and families, some of what we were doing previous, but it really prompted the importance in highlighting the continued efforts in that avenue.
0:36:00.7 DS: Yeah, no, and similar, oh, sorry, Terry.
0:36:00.8 TS: No, go ahead.
0:36:01.1 DS: I'm going to have one rider statement on that. I mean, I've seen similar with the genetic assessment. I mean, where it's just, yeah, obviously like, you know, hey, we need to build this out, we need to come up with a game plan. We're not, we're just absolutely below the bar here.
0:36:15.3 TS: And, you know, and what I'm hoping is that these standards are providing impactful changes, not just sort of, you know, centers just, you know, developing something because it fills a need. I think we need to take it further than that. And I think survivorship is really right for that in the sense that, you know, is it a multidisciplinary clinic that sees patients within six to 18 months of their care? Or is it really long-term care where patients are then seen, say, three years after their diagnosis and perhaps are seen for anywhere from five to 10 years afterwards? So I think we'll see where all that goes. Well, this is one of the hallmarks of the NAPBC, the multidisciplinary tumor board. This is a screenshot of our tumor board prior to COVID. And I think we all remember what those days were in the sense. And now we've seen a screenshot from my phone looking at all the different, and this was a few years back. I have a few more methods of joining calls too. And so it's interesting because Skype had been available since 2003, but it really took the pandemic for us to move forward with these virtual platforms. We always had questions about attendance. Many would, in the NAPBC, many members would say, "Well, I can't come to conference and you have an attendance metric."
0:37:32.8 TS: And we would say, "Well, just, you know, calling in on the phone or whatever." But we knew that that really wasn't ideal. You couldn't visualize the slides or what. But again, Skype was there, but it really took the pandemic. And that's really changed now in the sense that we see a large number of now members of a breast care team are really attending in a hybrid portion or virtually. I'm going to do an in-person survey in the next few weeks. And I had to remind the program that their members should come in that day because if I'm coming all that way, then they should come in too. And so, you know, and do they have IT capabilities of doing that with social distancing and what have you. So let's see, but really the whole idea of tumor board or much of it is that is there a change in care as a result of presentation of the tumor board? And early on, we saw that presentations at tumor board, there were probably about maybe 40 to 50% changes in surgery.
0:38:25.0 TS: Now what we're seeing with the changes in medical oncology and radiation oncology, that there are less changes in the surgical treatment options available or that are determined as a result of tumor board presentation, but more of those changes now in patient care are noted in the medical oncology side and the radiation oncology side. And the other thing also is, is that our genetics professionals now really have a seat at the table. They should be reminding us that who's really appropriate for genetic testing or not, and it doesn't have to be included patients with cancer, it can be others at higher risk, and then reminding us of getting the results done and then reminding us of waiting for those results before final treatment care is made. And so the genetics professionals really play a very important role, whether it be the physician themselves or whether it be a genetics professional that's part of the team.
0:39:18.5 DS: I have one question there. Is a lukewarm lunch a part of the accreditation?
0:39:27.3 TS: Yeah, exactly. [laughter] So now that you're at home all the time, no lunch, but understood. So basically, this is a screenshot of just the number of programs. This is from 2022, and you can look at your state and see how many accredited programs are located in your state. We are seeing some of the numbers come down a little bit as there's hospital integration because the NAPBC does not have a network accreditation such as the COC. So the numbers are remaining somewhat static, but you can see where the population is based. And I think if you want to go to Montana and start a program, you're more than welcome to go there. So the new standards were introduced in November of this past year. The prior standards were introduced in 2018, and now they've been updated and with a change in the manual itself. And so you can download the manual for free from the American College of Surgeons website. Part of the goal of the new standards was to focus really on the patient's journey. We felt that the standards were written more so, and it makes sense where we were 15 years ago, they were written by providers for providers, and now we're moving towards the approach of the patient journey.
0:40:45.4 TS: The standards also needed to be updated because of the changes in care. And it was also necessary to align with the American College of Surgeons because the other quality programs, and this is a screenshot to the right of the other programs such as trauma, rectal cancer, they all had a similar chapter alignment, but the NAPBC was different. And so you would go to the NAPBC manual and you really couldn't cross-reference to any of the other manuals itself. And then we also wanted to offer reciprocity with similar Commission on Cancer standards. So if you were a Commission on Cancer accredited institution and had achieved certain metrics for some standards, you didn't have to repeat that for breast that you could have reciprocity with that. So the timeline, again, the standards were just released this year. There's pilot sites that are being visited with the new standards. And then from what we learned from that, the standards will be updated at the end of the year. And then the final standards will be released really next year in 2024. This year is a year where most programs are just starting to adopt the new standards and still using the prior standards. The surveys are still being done on the prior standards.
0:41:56.4 TS: And again, just one slide here that again shows the change in the standards. The standards are now ordered in a way that mirrors how a person becomes a patient. It's not a medical oncology standard anymore or a radiation standard. It's more so a diagnostic standard. Each step was reviewed for how it's seen from the patient perspective and a rationale was created to guide the approach to the patient journey. So again, there are standards now for diagnosis, scheduling imaging, reviewing the imaging, a biopsy itself, pathology. There is a standard for evaluation and decision-making. Again, the clinician visit, risk assessment, genetic testing, further MRI, tumor board presentation, waiting for the treatment plan to make sure all testing has been completed, transitions to care, again, restaging after surgery, after chemotherapy or using chemotherapy, discussing other systemic treatments or local treatments and reconstruction, and then moving finally towards survivorship and surveillance. And survivorship and surveillance are now, you know, they're still separate but they're a little bit more morphed together than they were before.
0:43:09.6 TS: This is a screenshot of the new genetics standard and I'm sorry that you can't read it but all of you on the call are doctors and obviously, you know, the definition and requirement of the standard is, is that all newly diagnosed patients with breast disease or breast cancer should be considered. We have to use words like consider and they should be strongly considered for evaluation as well as potential testing and then also patients that are determined to be at high risk for a predisposition should be considered for testing. Really, a center is responsible for an evidence-based process for genetic evaluation, so there should be a process in place of really how testing and how monitoring is accomplished. There should be a written or electronic copy of the genetic testing information that should be reviewed with the patient. All too often patients are told over the phone your genetic tests are negative. Really, we should take it a step further and that information should be reviewed with the patient; they should have a copy of that. There really needs to be a documentation of effort to help patients inform their at-risk family members.
0:44:20.1 TS: Again, it's important so patients understand those at-risk family members that should be counseled and potentially tested and there should be consideration for referral to a genetics professional or someone who is knowledgeable regarding, say, variants of either unknown or just variants of significance themselves because of the questions with that.
0:44:40.7 DS: Yeah, thanks. And Edie, I don't know if you have any commentary around this in general on the genetics front.
0:44:46.1 ES: Yeah, I just think it's really fantastic. The most recent version I think that was released February of 2023, so just last month, includes the main bullet point of the City of Hope intensive course as well as the NCBC's cancer genetic risk assessment certification as main bullet points for meeting the genetic provider criteria and that's in addition to all the already available credentials for nurses and advanced practice providers. But I, you know, I just am really pleased with the broad opportunities for genetics professionals and those that have obtained a deep knowledge in this area to meet the standard. So I'm just, I'm really, I'm really pleased. I think it's absolutely fantastic and it doesn't obviously just apply to genetic professionals, genetic counselors, geneticists, physicians and advanced practice nurses, but also physician assistants and other providers and healthcare professionals that have this expertise are recognized. So just really, really pleased.
0:46:06.7 TS: We've made significant efforts to try to streamline the process. There was a little bit of pushback regarding the City of Hope course because it was just too either laborious or just didn't seem practical. Obviously, it's really what we wanted and really having such a quality course out there and felt so we're looking at other methods. We're not really trying to dilute it at all, but just looking at methods to be inclusive with the hope that those that then adopt the process will then hopefully even move forward and do a course like City of Hope. And can it be, say, the American Society of Breast Surgeons for surgeons themselves? I've asked them in the sense I'm on the board of the American Society of Breast Surgeons and have been working with Kevin Hughes, who's a surgeon now in South Carolina when he left Harvard, and have been working with him towards identifying certain criteria that perhaps surgeons should do on a yearly basis, that they should get at least two CMEs per year in genetics alone. And perhaps maybe a good way of doing that would be either by attending the meeting or whatever. And again, I think that that's necessary to do that on a... Every year.
0:47:16.8 TS: And so you'll see on my next slide, this is the genetics professionals credentials here. And on the last of the bullet points, and I apologize, I just tried to get everything on the slide, but you know, a board certified or board eligible physician with experience in cancer genetics. And that again, that qualification requires providing cancer risk assessment to patients on a regular basis. And I think we just need to do a little bit better job defining that. [chuckle] We don't want to restrict testing because we feel that testing should be done on many patients. But again, we just want to make sure that the testing is done appropriately and there isn't misinformation.
0:47:54.1 ES: I would just add to that again, you know, this broad list of recognized professionals really does highlight the variety of opportunities that we all have to gain deep knowledge and expertise in genetics. And not everybody wants to gain a credential or a certification. But the City of Hope course being in there just based on the rigor by which that program was developed. And Dr. TJ and myself are both, and many people on this call, have attended that course. But TJ and myself are both guest faculty on that course as well, so can attest to the rigor. And again, just really pleased that this is recognized because those people that have gone through the City of Hope course have deep knowledge and a commitment to excellence in genetics care for their patients for sure.
0:48:58.9 DS: Yeah, yeah. And you see Michelle Weaver now is commenting about [0:49:00.0] ____ being your lifeline. Absolutely. Yeah, no, this is just a fantastic list. And it's so nice to see this just expanding and high quality programs. So it's great.
0:49:11.5 TS: Yeah, as we move forward, I think just the complexity of just genetics is going to require more advanced education. And I'm really hoping that many of us will embrace that. And, you know, a course like yours that's available will not be thought of, well, that's just too much. You know, it's more like, no, you have to do that. That's what's required. It's only a week. And it really, you know, with updated CME is really what we need. And so there needs to be a method of incorporating that. So let's see where it goes, but...
0:49:40.7 DS: No, that's great. Well, we have a few minutes left. So let's, oh, it looks like you're kind of wrapping up. But I mean, we'll save this for a second. But any questions on the genetic certification? I mean, that's a big part of this audience. Just pause for a second.
0:50:00.0 Shelly: We don't have anything in the chat right now.
0:50:03.6 DS: Okay. Yeah, no, that's fine. All right, Terry.
0:50:10.4 TS: So I was in Chicago this winter. I don't think you were with us at that meeting, TJ. And so this was just a screenshot outside of my hotel room, a pink control tower. So interesting. Just two slides I'll go through very quickly. The Commission on Cancer now has standards. This is not NAPBC, but they're now incorporated into the new NAPBC standards. But the Commission on Cancer has become a movement towards doing, moving away from narrative, say, documentation to templates. And so these are templated dictations now that'll be required if you're undergoing a sentinel lymph node procedure. So these are placed in the surgeon's operative notes. And so the templates now are required as of 2022, and now programs will be judged on them in 2023. And these are just the data elements. So there's still a narrative format for the operative note, but there's a template that includes this. And I think what we'll see is in the next 10 years, we'll probably move away from narrative dictations anymore, and now there'll be more templates. And you can even see, say, some cancer centers such as Memorial Sloan in New York, all of their operative notes are templates. They're no longer performing narrative dictations.
0:51:27.8 TS: There's also one for axillary lymph node dissection. Again, the expectations that surgeons will incorporate these key points into the template and we'll see and learn from this experience as we move forward. So again, we're increasingly being asked to measure outcomes and quantify results. The electronic health record has its own challenges. There's administrative data. How do you get the material out? The hope had been that by now that all of the information that we wanted would be automatically abstracted from the electronic medical record, but we're finding that maybe at most 30% or so or 40%. And so we still have to hire data abstractors to get that information, which is impractical. But as Lord Kelvin says, if you can't measure it, you can't improve it. But Einstein said, not everything that counts can be counted and not everything that can be counted counts. So I think we have to keep everything in perspective.
0:52:26.3 Shelly: We do have one last question in the chat. Can you speak to the decision by NAPBC that genetic counselors can no longer be site visit reviewers?
0:52:38.4 TS: You know, I can't do that. I don't know why that was. I was not involved in that discussion. I still am, I hope, a very good friend with one of the counselors who was a site reviewer. I think it was more so physicians because there were also nurses on staff too. And I think pathologists now are not surveyors anymore. So I think things are changing a little bit in that sense that they felt for whatever reason the feedback that was given to them. So I don't really know that I wasn't involved in that decision.
0:53:15.5 DS: And Terry, one question I had as you were showing some of that is why we... And please correct me if I'm wrong. I mean, are there quality metrics around like ER, HER2, monitoring?
0:53:29.0 TS: You know, there are...
0:53:30.9 DS: Breast cancer. Not monitoring, but at the time of diagnosis.
0:53:35.7 TS: So each program should undergo a yearly discussion among the pathology department and the pathologists that are part of the breast care team should be presenting on a yearly basis percentage of ER and ER positive and HER2 new, and then the process for HER2. And as a result of that, some data is accumulated. And then there are discussions as a result of those numbers, what's the percentage of HER2 patients? How are we doing testing? Do we consider retesting patients and which patients should be retested? Do we need to look for different ways in making sure that our testing is appropriate? And then again, obviously, there shouldn't be anything equivocal anymore. It should either be positive or negative.
0:54:16.8 DS: And the reason I ask that is just thinking about biomarkers in general. I mean, you know, because I've always seen just more stringency on pathology biomarkers than genetic biomarkers. For instance, like even in the best center, even though since 2006 NCCN has recommended ovarian cancer BRCA1 and 2 testing, I mean, we're maybe at 80% even in the best centers. I heard 84% the other day, but at one center. And when it comes to breast cancer, I mean, is there anything that is saying, you know, is actually looking at metrics related to people meeting NCCN criteria, for instance, coming in and getting appropriate, at least optional, referral to genetic counseling or optional genetic testing and counseling?
0:55:00.9 TS: I think that's where we're going to go in the future. We haven't been doing that now. And I think with the adoption of the new standards that will hopefully, and the new platform that the standards are based on where we can now gather information, we can ask centers for that information and they can input that on the application. That's not a requirement, but we can ask them to do that. And my hope is, is that with the new platforms, this will allow us to obtain that information in a rapid fashion. But no, there isn't anything I know of at this time that we can do that.
0:55:31.7 DS: Yeah, and tumor sequencing will probably be right there, I think. [0:55:33.9] ____ Great. Well, I want to be respectful of everyone's time. Hey, that was incredible, Terry. Thank you so much. You are master of your art. You know and taught this group a ton about this process, so thank you so much. And really appreciate Edie coming on. Thanks. And, you know, we have many people share their, you know, either through questions or experiences. This was just a fantastic learning environment. Join us March 27th. We'll have gastroenterologist Sonya Cooper talking about BRCA1 and 2 and colorectal cancer risks, and hope everyone has a nice March until that. So thank you. Thanks, Terry, again.
0:56:16.8 TS: Bye. Thank you.
0:56:16.9 DS: Fantastic job.
0:56:17.0 ES: Thank you so much.
0:56:18.4 TS: Bye-bye. Thank you, guys. Bye-bye.