Ep. 18 – What Do Patients Want from the Healthcare System?

Patient advocates discuss how doctors and other providers can serve patient needs better


Guest surfer Anthony Villiotti, President of NASH kNOWledge, Inc. joins the Surfers. Tony and Surfer Donna Cryer, President & CEO of Global Liver Institute, discuss the way that better delivery of disease information and care can keep patients healthier longer and make them more knowledgeable about their disease. Too often patients are told not to worry about a fatty liver until the day they learn they need a transplant — this has to stop! Learn how we developed our word of the week (“indoctrinologist”), why the “What? So what? Now what?” approach would be valuable, and how timely information and coordinated care will lead to better patient outcomes.

Roger Green: For everyone, with an interest in NASH or more broadly fatty liver disease, surf’s up because episode 18 of surfing the NASH Tsunami starts now. When we started, I spoke with people who had experienced doing podcasts and blogs.

Roger Green: And what they said was, you get about nine or ten episodes in and you have no energy anymore. And I bet you’re not even going to make it to episode 13. That was a month and a half ago. It feels like an eternity and we’re still here. . Second, I want to welcome a truly special guest. Tony Villiotti, of NASH kNOWledge, Pittsburgh, Pennsylvania was one of the podcast’s earliest and strongest supporters. In weeks two and three, when there weren’t that many people who wanted to talk to me about this, except for the surfers, Tony was on

Roger Green: LinkedIn and we spent a whole bunch of time he was tremendously helpful and getting all this sorted out in the first place. He has quite a history, both as patient and advocate. He’ll tell you a bit about that in a moment. I want to talk a little bit about the cut-over from New Pod City to Buzzsprout for a minute, we’ve refound the audience members on all six continents now, which is exciting.

Roger Green: We’ve doubled the number of people who signed up for the weekly email alerts. And those are going to matter more because with Buzzsprout, we now don’t go up at 11:00 on Wednesday evening in the Eastern U.S. We go up at seven o’clock in the Eastern U.S., which means drive time in California… afternoon drive time, morning drive time in India. And I don’t know, probably a little bit late for you Louise, but y’all will have it there for drive time on Wednesday morning.

Roger Green: While we go up on Buzzsprout at 7:00, the other podcasts are still picking it up until 11:00 or midnight. So by signing up for the emails, you will get immediate information as soon as we go up. I want to thank Global Liver Institute, Donna and NASH tech CLDF, and the others that keeps spreading our message. And I want to announce that we have, in fact, as we promised last week opened our bulletin boards to initiate discussions about the topics that come up on the podcast.

Roger Green: Wayne Eskeridge was the first person to post response on this past Sunday, Wayne I’ve already answered. Let’s see where we go from here. For music this week, there are exciting things happening in the music world around liver.

Roger Green: For this week, I think what we have is more from the website, Louise found us last week. It can’t possibly be as good as Mr. Parr, but trust me we’ll come up with something and you’ll enjoy that. With that, on to our podcast. This week we are going to be talking about personal highlights. But the first person to go is going to be Peter. I’m not sure whether is highlight is personal, professional, or a little bit of each. Peter, why don’t you go ahead.

Peter Traber: Thanks, Roger. I want to let the listeners know that I accepted a position as the Permanent Chief Medical Officer for Selecta Biosciences, ticker S-E-L-B. It has a really revolutionary platform technology for inducing immune tolerance and has a broad spectrum of disease indications from gout to gene therapy to liver disease, including PBC. And I’m very excited to join their executive team as the Chief Medical Officer.

Peter Traber: It doesn’t mean I’m going anywhere with respect to liver disease. I’ll continue to be doing some consulting relationships in liver disease, and also hope to be a regular contributor to the liver meetings as well as this podcast. So thanks for letting me talk about that a little bit, Roger.

Roger Green: Contratulations, Peter. We’re all excited for you. It sounds like a great opportunity.

Donna Cryer: This is Donna. I’ll do personal. I hit a current best output personal record on Peloton, which has been my pandemic friend and an outlet. And so I’m very excited about that personal record.

Roger Green: Congratulations. That’s fantastic.

Stephen Harrison: And this is Steven. We have successfully delivered our first child back to Texas A&M to begin his sophomore year. He actually made it through his freshman year, despite the COVID pandemic. Although we did have to spend five and a half months at home back under our roof, so that was a win in itself, back out to…a win for everybody I would say. We love him dearly, but it’s time for him to get back to college so, he did get accepted into industrial engineering as a former major so….

Roger Green: Louise and Tony, you guys are left.

Louise Campbell: I have a special personal one. My brother is a dive master and had a recovery operation in a shipwreck and that’s obviously quite dangerous operation and they made it back safely. So for me, it’s the good work that he does and the fact that he made it back safely.

Roger Green: Tony, you’re left.

Tony Villiotti: Okay. As a rookie here, maybe I’m going to talk a little bit more about my overall experience.

Tony Villiotti: I started with fatty liver disease in 2005. Over the next 14 years, I hit all the stations in the liver disease spectrum. In NASH, cirrhosis, liver cancer. Then I had a transplant in early 2018. As a result of my experience, I started a nonprofit called NASH kNOWledge where we attempted to develop educational materials for those newly diagnosed. It also produced a documentary that was shown on public television here in Pittsburgh and also in Maryland.

Roger Green: So that’s, you give us good personal news of the past week.

Tony Villiotti: My grandson had his seventh birthday and we took the occasion to have a family get together, which hasn’t happened very often during the pandemic. So I got together with all of my grandchildren, all four of them. My kids and their spouses. And so that was a highlight of my week.

Roger Green: Good for you. And we’re thrilled to have you with us. And if you haven’t seen the documentary, anybody in this audience, go find it, go to the NASH kNOWledge website, look for it, it’s really quite fantastic. It’s a great, great piece of work, very honest, very personal and very compelling. This is a prospective highlight. I actually think I’m getting to go on vacation next week. Donna and I had this conversation a while back.

Roger Green: It seems that each of us, for the last couple of years, every time we had a vacation, it just didn’t come off quite right. Something happens on Monday and all of a sudden you are somewhere else in the world. It wasn’t exactly vacation. And I’ve had the challenges that many of us have had over the past couple of months, losing family members, being shut in by the pandemic. So the chance to go to my safe place, which happened to be Cape May, New Jersey next week, and just read books and vegetate for a week.

Roger Green: I will do the podcast next week but other than that, I’m not doing really any work. I’m looking forward to that more than I could possibly say, reading, biking, grilling, chilling, all that. Moving on, we had no questions this week, but we had letters from people who found us again. And the phrase that several of them used was they had been binge listening to catch up. Someone used the word ‘soothing’, which we hadn’t heard since week three and which always surprises and delights me.

Roger Green: I’m having a hard time understanding how this could be a soothing podcast, but nonetheless, if you’re soothed, that’s fantastic. If you’re bingeing, that’s fantastic. Just keep notes coming, tell all your friends, keep listening. And with that, let’s move on to this week’s main topic, which is what patients want from the healthcare system. If you recall, at the end of episode 16, we were talking about what the healthcare system does well and not well enough on the questions of dealing with illness and then promoting wellness and the differences between the two.

Roger Green: Now, we get to ask patient advocates who were first and foremost, patients both have had liver transplants and been through disease before that, to tell us a little bit about what the experience looks like from the other side. So I want to do this as a Q and A session. Let’s just call it that we’ve chosen different topics. And on each of those, Donna and Tony, are each going to talk for a couple of minutes about their experiences.

Roger Green: then we’re going to ask questions the first topic, is timely education and information. Tony, you look like you want to talk what do you want and need from the healthcare system in terms of timely information and education?

Tony Villiotti: Well, the thing I would have liked to have had…On a day I was diagnosed with fatty liver, I’d never heard the term before. I had no idea what the potential consequences would be. For example, I didn’t know that cirrhosis was in my future. I thought cirrhosis was a drinker’s disease, and I didn’t think that was something I ever had to worry about it. So it’d very helpful at that point in time, if I’d have been given information on what the potential ramifications of having a fatty liver, what it meant.

Tony Villiotti: I talked to people by, I said, “I wish on day one, I had been given a roadmap that would’ve told me where this journey could have led.” So my mind just, it all goes back to awareness. I’m also a diabetic, when I was first diagnosed with diabetes, I knew what diabetes was. I knew probably how I got it too, and I knew what potential outcomes would be. But with fatty liver, that information is just not out there in the public’s brain.

Tony Villiotti: And I hear this story over and over again from other patients, they were told they had a fatty liver. The next sentence is, it’s typically no big deal but just lose some weight. And so what I would have really liked to have was more education and information about this disease that in my case turned out being very serious.

Donna Cryer: In terms of timely information and education, I think we need to start with the doctors first. I think that having clinician education and information so that no patient ever again, has to face a situation where the clinician that they’re seeing hasn’t heard of NASH or doesn’t take it seriously, is really important. As we think about how to sync up both the physician side of education, as well as the patient side. You know, GLI is only six years old.

Donna Cryer: For half of that, we have been involved in NASH and people often asked us why we first reached out to all these different medical societies, particularly those beyond hepatology and endocrinology and cardiovascular disease. And that was because I didn’t want to have this wonderful cadre of now equipped, informed patients who knew all about the disease and send them into doctor’s offices that weren’t receptive.

Donna Cryer: We’ve put a lot of time and effort in relationship building. First and foremost, in involving a wider swath of physicians and nurses and clinical organizations who haven’t really been involved in liver disease, liver conditions, working with liver patients on liver health issues and bringing them to the table and really focusing on how they could use all of their annual meetings updates and an educational forum for more NASH information so that by the time patients got there, there was a receptive office.

Donna Cryer: And I always like to give my doctors – particularly as a complex patient – I like to get my doctors a little heads up, particularly if they need to look something up so that they can seem wise and knowledgeable and in control about things. And so I think the most important thing that I can say about timely information and education, it is time for primary care doctors endocrinologists, lipid experts, as well as gastroenterologist, and hepatologist to know about NASH and be prepared to treat NASH patients.

Roger Green: First question, Louise.

Louise Campbell: The question that came to mind was, if you have the ability to add something to the education of healthcare providers of all levels, whether it’s physicians, assistants, nurses, healthcare assistants, or physicians, radiologists, anybody, what would you two add to the training to improve all knowledge in being able to know about NASH or to be able to describe it to patients? What would you add?

Donna Cryer: Well, I think those are two really excellent questions. And they’re slightly different. So I’m very privileged to be married to a physician and here are the conversations he has about his training in medical school compared with our son’s for example, who is now an ENT surgeon. And so I understand how NASH has evolved. And so there needs to be CME around it and it continues to evolve. So what we’re telling doctors who may have been in practice for thirty years, twenty years, and one year may be different things.

Donna Cryer: And so I do recognize that. I think that the key opportunity that we have with the sensitivity to the workflow, overloaded and fifteen minute visits and all those different things is that in hopefully the same things, in the same ways that they’re thinking about helping to prevent cardiovascular disease in their patients that control their diabetes, really think about just adding their liver health and the steps, particularly for NASH that they need to do for their patients. And then some of those conversations can be very similar or additive.

Donna Cryer: Instead of thinking about adding a whole new work stream or whole new curriculum for them…I remember conversations that we had even two or three years ago with the American College of Physicians and finally getting a chance to meet them and really talk with a Chief Medical Officer. And then they said, what was the ask? And I said, “If you could just add in fatty liver disease and everywhere you have type two diabetes, that would be a win.”

Donna Cryer: And I said, “Is that all?” I was like, “That would be transformational.” And they said, “Okay.” So just that one addition, every place that physicians normally go to look and they see type two diabetes, if we can add and fatty liver disease, that would be such a great start and then more to come from there. It’s not even on their radar screen in most cases. And so we need to place it there first and then give them more advanced tools as does bless those.

Donna Cryer: I’m sure we’ll get into, and as you’ve covered, in terms of diagnostics and all those fancy things, but just putting it in the same sentence with type two diabetes, for example, or high cholesterol is the first step.

Roger Green: Tony, anything to add or thoughts?

Tony Villiotti: Yeah. One thought I had. I’ve had over the past couple of months, I’ve had two separate conversations with companies that provide continuing education credits for medical personnel, and neither of them have any courses that are related to NASH. And I think that’s what in addition to the territory that Donna covered, that would be a help too. There’s a lot of doctors who have been educated, being taught that fatty liver is a benign disease. I think the addition of more education in the continuing education realm would be very important and is very helpful.

Roger Green: Next question, Steven.

Stephen Harrison: I think one of the things I’ve struggled with as a physician and somebody that treats patients with fatty liver every day, and then try and the same vein to then go out and educate my colleagues and peers is, how do we deliver that message? As Donna mentioned, these primary care docs are trying hard as they can to get just the simple HEDIS measures all check, they get A1c, the blood pressure, the lipids, get the mammogram scheduled, the colonoscopy scheduled.

Stephen Harrison: And when do they have time to take part in that CME event, which is important to do, but I just reflect on my own practice. I see a long day of clinic. It takes me every bit of my free time to dictate the notes, to review the labs, to call the patients back, and then it’s time for another clinic. Even if I have time, do I want to take the time to go listen to a 45 minute or one hour webinar on fatty liver? It could be hypertension, it could be a skin disorder, it could be you name it that they need to get educated on.

Stephen Harrison: As Donna mentioned, I trained back in 1991 to 95 in med school and a lot’s changed since then. Many medications I never heard of have come onto the scene amongst many other things. So it’s a major issue. I think my question is a little bit wrapped up in that. And maybe Tony, since mentioned this, I’ll direct it to your way.

Stephen Harrison: You wish you had more natural history data when you were diagnosed. Somebody told you, you had fatty liver and that’s the “what?”. But the question is, “so what?” And that’s followed on by another question of, “now what?” And I think for me, did you feel like the physician didn’t know the natural history of disease or didn’t have time to, and explain it, or maybe you didn’t know the right question to ask at the time or a combination of all of those?

Tony Villiotti: It was probably a combination of all these things. I was seeing my doctor on regular basis because of my diabetes. So from the point in time I was diagnosed with fatty liver, nine years passed before I was told I had NASH,and cirrhosis, actually in the same appointment. And during that time period, sometimes he mentioned the fatty liver, sometimes he didn’t. So he didn’t leave me with a sense that it was something I needed to worry about. I worried about my diabetes, I had that pretty much under control.

Tony Villiotti: And whether it was a function of his lack of knowledge, or just not having time in an appointment to go into all the potential ramifications, I’m not sure. I do know that I’ve since talked to that physician after my experience. And he said now he takes a much more aggressive approach when he does diagnose a patient with fatty liver to explain more about it. In my case, like I said, I walked out of the office and succeeding visits to the office without a worry about fatty liver.

Stephen Harrison: That’s an interesting point because physicians and Donna can probably speak to this as well, from the lawyer side, as well as from the mother of a physician, as well as from the wife of a physician. Doctors don’t routinely change their practice based on one double blind randomized placebo controlled trial published in the New England journal, but I guarantee you Tony, they changed their practice based on my single anecdotal experience.

Stephen Harrison: And your doctor told you just that. And what we don’t need to have happen is this scenario where this has to replay itself in every physician’s office for people to get the message.

Donna Cryer: Tony’s experience unfortunately, is not unique. So we’ve seen some research that says that in 43% of patients left being diagnosed, but then having the risk of progressing to cirrhosis not explained or 70%. And again, these are people who actually got a diagnosis and we will deal with so many who don’t get a diagnosis. But 70% of those who did get a diagnosis so that the potential for a liver transplant down the line wasn’t said. And certainly you wouldn’t pack that all into a first visit.

Donna Cryer: But for Tony, to talk about not really understanding, leaving with the seriousness of this is a really important takeaway. And so to Louise’s, the second part of your very excellent question to me and how you communicate this a really key part of at least not… perhaps not ‘how’, but in the ‘what’ as Steven was talking about is that ‘so what’ is the seriousness that there’s something not benign, there’s something progressive and harmful that’s happening right now in your body.

Donna Cryer: And that it can lead to things that are even worse, we don’t want that to happen. I love that construct of ‘what’, ‘so what’, ‘now what’, Steven, because then, the ‘now what’ is evolving into more and more options, but it’s certainly not ‘go away and come in ten years when you need a transplant’ which happens to so many patients.

Donna Cryer: And I think that the more we can get visibility to these stories across the various platforms that we are doing, everything from news articles and simple matte releases to web and Facebook and this podcast, the more than it will have to be one patient, one doctor to be able to get everybody on board and where they need to be.

Roger Green: So Donna it strikes me that you and Steven are now even, which is that last week, you gave him nothing about us, without us. And now he gave you ‘what’, ‘so what?’, ‘now what?’.

Roger Green: So you’re tied at one, we’re all going to watch to see where the tiebreaker is on this. Peter, Why don’t we go into your question?

Peter Traber: Yeah. A couple of things come to mind. I think some issues are accredited information and how do we ensure that people are getting good information? The second is around continuing education and reinforcement learning. We always think of continuing medical education for physicians as one time, I’m going to go sit down and learn everything about one thing.

Peter Traber: But I think of continuing education as a process and a reinforcement and people don’t learn everything they need to know on the first setting and how people learn now is different, I think than certainly the way I was taught in medical school. And it’s through digital media and constant reinforcement.

Peter Traber: And then finally is the issue of patient to physician learning direction. In other words, patients can drive physicians to learn more and know more about their situation. So I wanted to ask your views on those three things, the issue of where we get accredited information, that kind of process of continual learning that should go on well beyond just the initial discussion, and then also how patients can drive their physicians to learn more and what approaches might be taken there.

Donna Cryer: Peter, I’ll take the last one first. The Global Liver Institute has some NASH information sheets that we do hope or share, particularly with primary care. And we’ve gotten feedback that patients have taken them into their doctor’s offices, as well as sharing them with their families to educate their friends and families around this. I certainly know, I’m the type of patient, and I can certainly only have the type of doctors who are, one, continually learning and who don’t take umbrance.

Donna Cryer: If I have a conversation with them about the latest research or what I’ve learned, or just plain old fashion push back, my liver enzymes were elevated, a year or so ago. And so my really fantastic gastroenterologists use very careful with me now, I’m twenty-five years post-transplant and he said, “We might want to think about a liver biopsy for you as he passed through the infusion center to say hello to me.” And I said, “How about, no? How about we repeat the labs and then I’ll give you a choice of…”

Donna Cryer: I named three different types of noninvasive diagnostics that he could use because for me, biopsy was off the table. So that was me teaching him about noninvasive diagnostics and we had a really great conversation, but ultimately, my labs were fine the next week. So I think there is that state. So certainly, now we’re advancing a little bit and GLI is three years into our NASH Council, building out the patient education piece for patients to bring in the ed information to share with the doctors is an important part.

Donna Cryer: Now that we’ve worked on the receptivity and the expectations that physicians should be learning about NASH. And that the second piece is, we’re really excited about all the different members of the NASH Council who are now putting out accredited CME and having symposia at their annual meetings, non-hepatology conferences. And that’s really fantastic.

Donna Cryer: To Tony’s point, different CME companies who are starting to add often either we consulting Tony or Wayne Eskridge of the Fatty Liver Foundation or myself, and bringing patients in to be involved in helping them shape that continuing education and provide different digital nuggets and shareables and medical podcasts and medical Twitter, and all of that surround sound to reinforce this message.

Donna Cryer: And I want to give kudos to AASLD and their e-learning platforms and how I really think they’ve upped their game in terms of the different ways that they are delivering hepatology information to their members. And now discussing about how to open that up to other specialties.

Tony Villiotti: I have two thoughts to add. One is that, I think this is where awareness I think is really critical. I think if a person is a diabetic, and was overweight, and they know that those risk factors for liver disease, did they ask their doctor, “Could you do this stuff?” So I think if there’s a way to increase awareness among the patient population as was mentioned earlier, that that will drive the discussion with the physicians and hopefully lead to good outcomes.

Tony Villiotti: The second thing is that, what struck me when I first started the nonprofit back in 2018 was my goal was, I looked at it from the perspective of the patient and what information would I’d like to have had on a day I was diagnosed with liver disease and we developed something called the fatty liver roadmap.

Tony Villiotti: And in my naive view, without completely untethered to the medical community, my dream was that at some point in time, if someone was diagnosed with fatty liver, the doctor would just rip off the sheet that had the roadmap and along with some definitions of the terms used in the roadmap and hand it to the patient, and hopefully that would drive additional awareness of what the implications of this disease would be. And also would encourage the patient to ask more questions of their physician or specialist, if it got to that point.

Donna Cryer: And I think that’s happening, Tony. I remember looking at that for the first time and just being wowed by it. It’s not like you had a team of graphic designers and a whole group of consultants working with this, you did something really valuable based on your lived patient experience and your fine analytical mind. And you’ve evolved that piece and the feedback on it is great. Their fancy terms about clinical workflow and we have a whole work group on that, and there are groups like NASH Net that are working on that.

Donna Cryer: But you advanced it so far just based on your lived experience and indeed that patient navigation piece needs to match and mirror the clinical workflow. And I think at this point, it is going to be the patient needs a navigation and our articulation of them that will drive and determine the clinical workflow.

Tony Villiotti: No, I was going to say that, I think all of that made perfect sense. Yeah. I appreciate your comment on my prevantative road map. I think that it takes a village to solve this problem and hopefully that will happen and is happening.

Roger Green: So I want to circle back around to some of the villagers. When you look at doctors from a forecast or marketing research perspective, one of the things you learn is that the intrinsic rewards of medicine are based on what a doctor thinks, well, until it entails to have a good job.

Roger Green: There were moments where that’s led the medical community in different countries, including, but not limited to this one, not to adopt products that really are medicines that really were good medicines because in some way, shape or form there, a side effect or an issue around the medicine that conveyed to the doctor that he or she, wasn’t doing a good job.

Roger Green: When you talk to doctors at least up until last ten years ago, when I stopped doing a lot of work in diabetes, about diabetes, one of the things that you always heard was a certain frustration with the patient, because the doctor didn’t know how to help patients and they weren’t helping themselves. Now that’s gotten better somewhat, but I’m wondering how much of what revolves around this whole set of issues is a function of doctors not knowing what success looks like.

Roger Green: I think hepatologist easier to figure out what success looks like, the primary care and some of the other specialties, even if they know the disease is there, do they have a definition of success? Are we giving them a definition of success that’s practical and that they can actually execute on? So they feel like they’re winning?

Tony Villiotti: Yeah, that’s something. The winning part of it. I think just from my personal experience, I think additionally, the doctors didn’t have that view of what a win was and in my case, my doctor saw me progress to transplant and he certainly couldn’t have chalked that up as a win. But I think as he became more aware … and this is a general practitioner, as we became more aware of the fact that he had more patients like me, I think if this avoidance of disease progression, I think would in my mind would be a win.

Roger Green: I think that’s right. I think there’s a certain amount of… the outcome he would have expected is that you simply would have faded away. So when you have transplant, lose weight, get committed, all that stuff, that becomes a story that will open somebody’s eyes because of the outcome they didn’t expect. And then from there on out, they’ll understand the final wording differently. I think that’s clearly correct.

Roger Green: So I think your case, Tony becomes an example of showing the doctor that a win that he might not have considered before it was, in fact, possible, and that that would affect how he treats everybody. And Steven, I think that lines up with your comment about it’s the one case that changes people’s minds. What can we do when that one case doesn’t exist? Or is that just going to be a limitation?

Donna Cryer: Well, this is Donna. Certainly in charge of International NASH day now, having just done that on June 12th and the panels that we did that are still being viewed by thousands of people, the millions of media impressions from the NASH releases, and the collaboration, certainly that we’re building as the the consequences of those.

Donna Cryer: So that there’s a 365 day, not just a one day awareness initiative is all towards that end of making sure the burden isn’t on any one patient to have to be that cautionary tale, if you will, to a physician so that physicians can be successful for their patients because we know physicians want to be successful for their patients and have that win as defined as not needing a transplant in the first place.

Donna Cryer: I started my career, if you will, with my transplant and I’ve been feel like I’m working my way backwards or upstream, if you will, my whole career. And so the opportunity for NASH is really positioning it as a public health issue with public health solutions is, Louise, you talked about the opportunity in the UK and we’re seeing in Canada, but the opportunity to deal with this as a public health issue, not as scooping somebody out just before they advanced to cancer or transplant

Donna Cryer: I think we’ve started to touch on both of them in the initial concept, but Louise had made such an important point in her episode about care coordination that I think if we could get to that team that is necessary both clinical care team and home teams to wrap around the patient, that’s successful for this and maybe do that under the auspices of medical care.

Roger Green: So we will take a look at a second issue. I think we have time for two today. Second issue is medical care. Donna, let me ask you first this time, what does the patient need and want in terms of medical care that should be the goal that the system strives towards?

Donna Cryer: Coordinated care. Louise made such a really important point and set of points in episode 16, I believe it was on nursing and working with patients that they cannot be overstated or overestimated, particularly for NASH patients who would most likely have one or more concurrent conditions like diabetes.

Donna Cryer: I really dislike the word co-morbidities by the way, I’m just going to say that and like concurrent conditions, rather than being told all the ways I’m going to die or get sick or all the things that are wrong with me. So I think that and having been bounced between specialists and being one woman HIE delivering information to each of my doctors or trying to get them on the same page about reaching some particular goal or a myriad of other things that as a complex patient.

Donna Cryer: Which by definition, any NASH patient is and most liver patients are to have care that is coordinated and seamless. That means information handoffs between physicians. That means common goal setting. That means multidisciplinary teams so that the responsibility doesn’t fall on just one person to deliver all this type of information and all this type of care, care coordination is really the the gold standard that we’re looking for here.

Donna Cryer: And as people set up fatty liver disease clinics in many areas of the country and in the world, that’s what they’re trying to deliver. That’s what they recognize that there needs to be more of a one stop shop or at least the onus on the healthcare system to knit all these pieces together and to give the roadmap that Tony was discussing for that work to be on the shoulders of the healthcare system to put those pieces together for patients rather than a sick person to have to put them together for themselves.

Roger Green: Yep.

Tony Villiotti: Yeah. I agree 100% with that.. Just as an example, and I’ve heard from my experience, and I’ve heard it from other as well, if the doctor tells you to lose weight and without telling you how to lose weight. And my first thought when he told me lose weight, was, “If I knew how to lose weight, I wouldn’t be sitting here right now.” And I think that’s where have as a part of that team, you need somebody who it doesn’t… and it’s unlikely to be the general practitioner, but somebody on the team, dietician or nutritionist who can lead you down that road.

Tony Villiotti: My experience was that even I found that some of the first dietician, we talked to was misleading in terms of, she didn’t know that much about liver disease. So many of what she gave us was turned out to be incorrect. We finally got to the right dietitian. It made life much easier. In my case, I’ve still struggle to this day sticking to a healthy diet. But that’s just one example. And I think and again, in my case, I know the hepatologist needs to work with the indoctrinologist.

Donna Cryer: An endocrinologist?

Tony Villiotti: Yeah, there you go.

Donna Cryer: Okay. I think though you’re on the right track though, because we do need some “indoctrinologist” to really get people to see the light and to believe in the type of behavior change that’s necessary for the type of weight loss and the type of lifestyle that’s necessary to improve NASH. So I think that was a Freudian slip that we may need to adopt.

Tony Villiotti: Exactly. And as you said with concurrent conditions, it all has to blend together. It might be good for one of your conditions may not be so good for the other. So that’s where the teamwork is really important.

Roger Green: So that’s really interesting because one of the things we also talked about in episode 16 was the question because in healthcare system where a doctor sees a patient only once a month, or once every three months for a few minutes, and Steven talked about all the pressures that primary care docs are under. Do you have enough time and resources in the system to support wellness as compared to simply combat illness? And the answer we had was probably not.

Roger Green: That some of that might be better in the hands of the Weight Watchers or a Noom or any one of us, as Louise talked about the small groups that are set up all over the place to do that. But you’re saying, that might not work out so well for people with multiple conditions unless whoever is doing that really knows what they’re doing as they can encourage people to take their diets in directions that may not be helpful?

Tony Villiotti: Right. But I think once someone is on the right path, once they get that initial advice, that makes sense, it considers all the conditions. I wouldn’t expect the general practitioner to be the one who keeps you on the right track, but these days, there’s a lot of interactive applications and so forth that can help you to stay on. Weight watchers is a traditional approach to take, but there are virtual counterparts to that that would be very useful.

Tony Villiotti: Even in our case, we’ve actually started a support group for NASH patients, where the patients themselves again, well, it’s same weight Watchers principle, but the patients themselves help keep each other on track.

Donna Cryer: I think that peer support is so important and I’m really, congratulations to NASH kNOWledge and to Tony and Betsy and the daughter, Gina, who’s now taken a leadership role in the organization, as well. As a family they’ve really embraced supporting patients and helping to build up that peer support and that’s really important. I think that one of the issues that had been discussed in a previous episode was the consistency of information across specialties, and then the frequency of reinforcement by the physician and the three month timeframe.

Donna Cryer: And I think that as someone who uses one of those digital apps that Tony refers to, and I have a weekly check in with my wellness coach and have had for the past four years, not for weight, but just in terms of how to keep me out of trouble, how to keep me, as a complex patient, well, instead of just on the edge of a hospitalization or something. We started that after hospitalization several years ago for a flare of my Crohn’s disease.

Donna Cryer: To give reinforcement of the medical information, to answer the questions, to figure out how to personalize it given my own life circumstances before this, it was because I traveled a lot. So I can perfect my lifestyle or healthcare regime here at home. How can I take that show on the road, so to speak? Or how can I keep that voice of clarity that the Colonel Dr. Steven Harrison has, and I wrote down again today, no potatoes, no rice, and I know you added the no tortilla rule to that. I thought I had a loophole, but no bread, no pasta, no potatoes, not even sweet potatoes.

Donna Cryer: So how do I implement that? How do I look around my house and really put that into place, and that’s not an every three month conversation or endeavor, that’s really a weekly or daily conversation. Until I had the wellness coach and I upload data in my scale and other things feed into it, some of it automatically, even with all the physicians that I had and even have at any one given a time, it was the first time that anybody saw a daily integrated picture of how I was actually doing. A healthcare professional could work with me on those daily activities and ups and downs and weekly fixes and adjustments to it and brainstorming.

Donna Cryer: That’s what’s been so essential to keep me as healthy and vital and effective and productive as I am not just, okay, she’s alive 26 years post-transplant, and/or she’s not in the hospital, that’s an interesting, it’s a good outcomes measure. I’m not in the hospital, but there’s so much more to life to just not being in the hospital.

Donna Cryer: And so to achieve that wellness and to sustain it for people are going to take a lot of different types of providers and coaches and platforms, and a daily, weekly, much more frequent type of interaction than we’ve traditionally seen in medical care deliver.

Tony Villiotti: There’s so many tools that are available to us now that just yesterday, I came across across an app for children and their diets where the child, and I’ve really had a chance to really check it out.The child takes a picture of what they ate and they get feedback on their meal. And so there are just so many tools out there that hopefully somebody smarter than me can put all those together, to come up with really a great solution for people like me.

Donna Cryer: No, Tony, that’s going to be yours. So you got the digital health task force email, I’m sure from us. So you and your granddaughter are now proud of that. So you think the need for curation and the same way that Peter was talking about getting a credit information. I’ve worked a lot with folks in the health information technology space, when I served on those federal committees for woodsy and they’re folks like Dr. Danny Sands and Daniel Craft who worked on curating medical and healthcare apps for physicians and for patients.

Donna Cryer: We’re certainly going to need to do that in the NASH space as we help people wade through all these options. And again, to your own roadmap, what type of tool is best at what point in their journey? How would they use it? Is it safe if they keep their information safe, all these different things about privacy and security as well, need to be taken into consideration. We, as patients will have to take that on with some good consultation from some folks like our friends here.

Donna Cryer: Since that is going to be part of sustaining a lifestyle, as well as coordinating all the different aspects of your care that are necessary to be successful for a patient with fatty liver disease or NASH. That’s going to have to be part of our remit as well. Or at least, I take it on and I’m always going to ask you for help.

Louise Campbell: I think Anthony and Donna summed it up extremely well. I think generally people have a really hard time and that’s nurses, that’s physicians. It’s everybody about notion that weight loss is not complicated. It actually is more than a willpower game. It’s a science. We know that obesity is an epidemic, is way complex. It isn’t just more than calories. It’s interactions between the environment, the behavior, psychological medical, genetic, and microbinomic.

Louise Campbell: And I think if we look at it as a science, do we define obesity itself as a disease. Because if you define it as a disease, then we get people addressing it way earlier in a timeline. If we look at childhood obesity, certainly in the UK, very few parents will take their children to a primary care physician to say, “My child’s overweight. Do they have a problem?”

Louise Campbell: So it develops very early. Whereas the schools, when the child goes into school, it doesn’t say, “You are overweight. You need to see a physician or primary health care to be screened.” We need to look an awful lot deeper to be able to give that help and utilizing these apps is fantastic. The more people can utilize them, but we have to be accepting as a community of healthcare professionals that it’s just not as easy as saying to somebody, “Go off and lose weight.”

Stephen Harrison: This is Steven. Just listening to everything that’s been said, it’s been fascinating. I think to Tony’s point, before physicians take a broken piece and try to make a masterpiece, how do we make it easier for that primary care physician to identify the “at risk” fatty liver patient? If there’s a hundred million Americans with fatty liver, do we have the 80% solution? If only 20 to 25% of fatty liver people develop fibrosing NASH that progresses, is the low hanging fruit excluding those that aren’t at risk today?

Stephen Harrison: And if it is, what is that? FibroScan is an option. We know the negative predictive value of that test is incredibly high. If the kPa is less than six, I don’t worry about that patient even if they have fatty liver, at least today. Maybe in six months a year, we will repeat it. I often talk to primary care physicians about the low hanging fruit of an AST to ALT ratio. We know this is an ALT predominant disease when you measure the liver chemistry test and the ALT and AST are elevated.

Stephen Harrison: As long as that AST is not at the same level as the ALT, the risk of having advanced liver disease is low. Tony, if you go back and look at your numbers from 2005, your AST is probably higher than your ALT because that’s what happens as you progress across a fibrosis spectrum. The AST rises and the ALT falls. That’s a very simple test. The problem with that test is liver enzymes are often normal in the setting of fatty liver, even with moderate to advanced disease.

Stephen Harrison: Getting at something simple, we’ve talked about, NAFLD fibrosis score, FIB-4 sequential testing. I’m in the middle of writing up a very simple, pragmatic roadmap for primary care. I need to make it simple. I think if it gets complicated, they’re not going to do it. Any thoughts on that about keeping it simple? Does it need to be complex, What are you thinking?

Donna Cryer: As a first win, if we got everyone who currently has a diagnosis of type two diabetes screened for NAFLD NASH, because of the high prevalence of NAFLD and NASH in type two diabetes patients and how, like Tony, how it seems that they’re much more likely, much more quickly to progress to the severe complications.

Donna Cryer: If we succeeded there, it would create a success loop because the population is so affected it would have an impact on not only endocrinologists, but all physicians who may not quite be convinced that this is something real and something that needed to be urgent and actionable. What if that first pass, if that high risk population was defined not in an exclusive way? I’m thinking about focusing in allocating my efforts and resources in people with type two diabetes.

Peter Traber: This is Peter. There’s this concept that you can have things that are complex but not complicated. So things can be complex and complicated, or they can be complex and not complicated and vice versa. And doing what you suggest in diabetes, I think is very important. That’s not a complex issue. It’s a simple issue, which makes rational sense.

Peter Traber: However, the implementation is complicated because of all the issues you have to do to get it implemented. And I go back to what Steven said about how we might educate patients and deliver messages. I’ve been up and down in my weight, over my entire life. And at one point, the doctor said, “Well, you have to lose weight.” And I say, “Yeah, you tell me that every time.” And he goes, “Okay, let me give you a simple suggestion.” And I said, “Okay, well, if it’s simple and complicated, I won’t be able to do it.”

Peter Traber: He said, “No, this isn’t complicated. Put out your fist.” I put out my fist and he said, “Don’t eat a steak any bigger than that, the size of your fist.” And I looked at my fist and I said, “Well, I always eat a steak bigger than that.” And he said, “That’s right. That’s right. And you’re fat.” So it was impactful to me because I said, “Look, that’s a simple issue, and it’s not complicated to implement.” Now, I don’t want to dumb down this whole conversation about what we need to do for our patients.

Peter Traber: But I think in some ways, Steven is getting at that issue for what physicians and healthcare systems can do. Make simple suggestions that are not complicated to implement and do it many times during the patient’s care. Just a thought.

Roger Green: think I’m going to disagree with that What I hear Donna talking about, Steven, is the idea that only 20% of the patients who actually have fatty livers are patients needs to focus on in terms of fibrosing NASH. Your suggestion and your doctor was a great suggestion for dealing with obesity and maybe diabetes not focal to NASH.

Roger Green: If we want to get vocal to NASH, then I run around to Louise Campbell side of the table, which is, so why aren’t we testing everybody? Which is what I’ve heard Louise saying in my head as her picture stares at me on the screen. It wasn’t this conversation. Louise, I’m getting you wrong, please forgive me. I know you have a chance to comment in a minute.

Louise Campbell: Oh, you’re getting me right.

Roger Green: Yeah, I thought thought so. We’ve been doing this for a while. So my feeling is that what you say, Peter, about the simple rules is correct. But it’s correct in the totality of everything is about syndrome X and metabolic syndrome. If we’re focusing on the part of the neighborhood, that’s about a fibrosing NASH, then how do we get everybody tested once to figure out what the problem is there? And then I sounded a lot like Louise.

Peter Traber: Okay. Yeah. I don’t disagree at all with what you’ve said. So I guess you disagreed with me, but I don’t disagree with you disagreeing.

Stephen Harrison: Let me jump in real quick. Before we leave, I was just made aware of a recent publication. I believe in Gastroenterology, by my good friend Mazen Noureddin out of Cedars in L.A., and this addresses Donna’s comment about diabetics. The title of this paper, “Screening for nonalcoholic, fatty liver disease and persons with type two diabetes in the U.S. is cost effective, a comprehensive cost utility analysis.”

Stephen Harrison: Reading through this, it seems to me, this is really very simple and pragmatic and drives home what we’ve always thought, but ultimately hadn’t been proven and their hypothesis was that screening for NAFLD in type two diabetes patients starting with ultrasound and ALT or AST followed with noninvasive testing for fibrosis, will detect those most likely to have fibrosis F2 or greater is more cost effective than not screening this population. I believe they go on to look at a Markov model because the action is true.

Stephen Harrison: More to come as I digest that paper. But it gives us our first bit of real data to actually enforced that recommendation. Donna, I don’t know if that was just on the meeting question but you need to find that paper because I’m glad you did and it’s out there for people to look at.

Donna Cryer: Thank you.

Peter Traber: Steven, that that gives me déjà vu when years ago when you were at Brooke Army base, our company purchased a fiber scan for you and we discussed putting it in the endocrinology clinic to screen patients. They’re looking for patients to enroll in a trial. So you were way ahead of your time there.

Donna Cryer: Freeman relates how he did that as well. And yes, Mazen did send me the paper. So it was a leading question. And thank you for following all those bread crumbs.

Louise Campbell: I’ve got exactly the same paper and it was obviously to guest surface as well name, Naim Alkhouri and Mary Rinella. Ultimately what it proved was that adding Fibroscan, detected quite earlier F2 which allowed far earlier interventions to help patients.

Louise Campbell: And as we know, I think it goes on to talk about FIB-4 and most of the others not really being accurate enough until F3. So that importance again, of finding earlier and making it a wellness and as an achievable change. We’ve all been reading the same, keeping up to date, I’d say, this week.

Donna Cryer: But in a target rich environment, and I hate to refer to my fellow patients as a target rich environment, but when I talk with several of my friends who are renowned diabetes advocates, and I said to them a year or two ago, what do you know about NASH? I got blank stares. For something that’s so important and so impactful for a particularly sizeable population for whom the consequences of this is so near and so dire.

Donna Cryer: I think that we would be remiss if we didn’t now follow up on the data. But also what logic would tell us is a practical path forward given where we are in the field and the minds we need to convince and the data that we need to generate to allow all of these wider efforts to be effective.

Roger Green: On that note, let me suggest that we move to closing because that was a fantastic statement for us to go out on. Alright. And we’re a little bit over time.

Roger Green: Final question everybody. We will let Tony not go first on this because he hasn’t played this game before. What’s the one thing you heard this week that surprised you the most?

Stephen Harrison: Yeah, Steven here. I just want to thank Tony for this word, “indoctrinologist”. That is an amazing word I know it didn’t mean to come out that way, but it is so apropos, I want to hit on it too. And I think that is exactly what we need to be towards these physicians is indoctrinating them on NAFLD, NASH, epidemiology, natural history, diagnosis, and treatment.

Stephen Harrison: And then I also love, I did not realize, Donna has a bit of military in her. Deep down inside in places. She doesn’t want to talk about, she is a smart girl because she talks about “target rich environment.” And that is all up my alley. I love that. Thank you Donna.

Louise Campbell: The bit that surprised me most was actually when Donna talked about hating the word co-morbidity. We obviously use it a lot to try and stress to fellow professionals and physicians that these are co-morbid and related conditions. But actually hearing Donna’s take on that and how it can affect how you think you’ve got other conditions and how you feel about that will probably make me change my language. So thank you for that.

Donna Cryer: Okay. I will give a sign to Steven. As you pointed out early in the episode, I really was affected, then we’ll take forward the “What? So what? Now what?” construct forward. And Steven you’re right. This is not the first time I’ve been accused of having a military leaning.

Donna Cryer: You can certainly talk to my team about that, but actually in many different companies that I’ve started, we’ve actually gotten awards for our hiring from the military and particularly my former air force, so I remember her referring to me to someone in the airport as a, “Oh yeah, this is my civilian commander.” So I wear that with honor.

Peter Traber: I was just going to say nothing really surprised me today, but I am super proud to be on a call with and I think we’re all lucky in the NASH field to have patient advocates like Tony and Donna and keep up the great work guys.

Roger Green: Tony, follow that.

Tony Villiotti: I was pleasantly surprised to hear that. I think that the medical people on a call agree with the patients and that there needs to be more done educating everybody, both doctors and patients.

Roger Green: I’m not in such a far place from that. Tony, I guess what surprised me is that except for the one comment about Peter and steak, which turned out wasn’t a disagreement at all, since you disagreed with my disagreement, I thought we were all in violent agreement about a whole bunch of really important things.

Roger Green: That says to me that the question becomes “How do we take this perspective that a lot of different disciplines fundamentally agree on and take it out to all the different disciplines we come from in a way that we have points of tangency and everybody could connect?” And with that, I will go wrap up. That ends today’s episode, I want to thank the surfers for doing your usual excellent job. Tony, you were everything we hoped you would be when we brought you on. We’ll find a way for you to come back, because you’ve really been great having you on with us. If you have comments or if you want to follow up anything on this discussion, remember we’ve now got discussion groups on LinkedIn and Facebook that Louise and I are checking regularly. We can cycle to other surfers or other people we know to make sure that your questions, your comments get addressed, that you get the information you need. Ok, beyond that, special thanks to the regular people, Mike Wilson, our engineer who makes this all so easy, the distribution folks at Buzzsprout, Eric Rounds, social media master, Politeia, who got all these folks their microphones and got them up and running, our new editor Ryan Segura who will start this week making fantastic contributions, and an extra special thanks to you, our subscribers, our listeners, who help as we continue to build the leading fatty liver podcast in the world and raises issues and educate people. We will be back on Thursday August 19, with episode 19. Hard to believe we are almost out of our teens, where did all those years go? We were so young once. And with that we will have music playing. Make sure to go to the website, Surfing NASH website, to check out information about to see who is going to be on and what we are going to be talking about. Enjoy the music on the way out. Stay safe. Surf on. We’ll see you next week. Bye bye now.