Gregg Masters 00:07
This is PopHealth Week on HealthcareNOW Radio. I’m Gregg Masters Managing Director of Health Innovation media the executive producer and co host of the show. Joining me in the virtual studio is co founder and principal co host Fred Goldstein, president of Accountable Health LLC. PopHealth Week engages industry leadership and stakeholder voices spanning payer provider patient, vendor and regulatory communities in population health best practices and strategy connect with us via www.popupstudio.productions or follow and direct message me on Twitter via @GreggMastersmph and that’s Gregg with two G’s. On today’s show, our guest is colleague and a transformational voice for innovation that matters via incremental ism. Nick van Terheyden. MD aka Dr. Nick is a principal in the Washington DC Office of ECG management consultants and a popular voice in the healthcare now radio lineup of hosts. And with that introduction, Fred, over to you.
Fred Goldstein 01:15
Thanks so much, Gregg. And Nick. Welcome to PopHealth Week.
Nick van Terheyden 01:19
Thanks for having me.
Fred Goldstein 01:20
It’s a pleasure. We’ve been doing this for a while. And we’re today I think we’re going to talk about something that’s sort of near and dear to both of our hearts in the sense because we both seem to be involved in studies or clinical trials.
Nick van Terheyden 01:32
You said near and dear, I thought you were gonna go straight to whiskey. But okay, we can talk clinical trials. Sure, yes. So why is it near and dear? Well, a couple of things. From my perspective, personally, I as a clinician was desperate for the data. I was desperate for patients. In fact, even in medical school, I was looking for trial participants. I did two particular studies. One is looking at orthostatic hypotension. What’s that? Well, that’s if you stand up, your blood pressure goes down, I was looking at it as an indicator in pregnant women to see if we could predict those women that were going to have preeclampsia. So they would develop hypertension. And could we measure their blood pressure and I was desperate, as she was kind of interesting. A lot of patients were willing, I guess it wasn’t too much interaction intervention, you know, they just had to have their blood pressure. But you know, it’s a time commitment as much as anything else. And I’ve had some others as well. But then I’ve grown older, actually, my let’s we’ll stick with that era. As a medical student, I was paid to be in clinical trials. And that was some of the way that I funded my way through medical school down at the market near St. Thomas’s hospital, there was a professional clinical trials organization. And the first trial I did as a volunteer I got paid for, I had to five hours with an NG tube and nasal gastric tube into my stomach and they kept taking samples, and we’re seeing if the drug that they were giving was reducing my acid production. And it was the most enlightening experience. And it made me so sympathetic to patients. So
Fred Goldstein 03:21
it’s like giving your body to science yeah,
Nick van Terheyden 03:24
selling, selling my body size was how we saw it. And it was filled with medical students and, you know, clinical folks, that was really their major source of income. Yeah. And it was pretty good money actually. Which, I don’t know. I mean, maybe in this day and age, that might not be acceptable. But it was at the time it wasn’t covered.
Fred Goldstein 03:48
Yeah, they still do that. Yeah, still get paid for some of this stuff. So I know you’ve also been in one more recently, perhaps?
Nick van Terheyden 03:54
Yeah, so I’m actually a volunteer in one looking at Sirolimus, or rapamycin, which is a drug used in transplant surgery as an immunosuppressant. And it also, by virtue of its method of action, has some interesting input or impact on longevity. And there is a question over this and a number of other drugs, can we treat aging as a disease? And if so, is this one of the drugs that we could do now? Those in the medical profession will know this is a pretty significant drug. You know, you don’t you give this to a renal transplant patient to suppress the immune system so that you don’t get the rejection. That is the big fear. One of the big fears with renal transplant patients. And I’m sure those listening that maybe don’t have the clinical background or you know, not all the inflammation can probably recognize that’s a pretty powerful drug, and to be taking that, you know, might cause some problems. That’s part of the process. So this is a very early stage trial, they’re looking at dosing, to see if they can find a small enough dose that doesn’t induce some of the potential side effects, but still generate some of the positive effects that we see with it.
Fred Goldstein 05:26
And you did this because you really interested in longevity, as you say, or I would say longevity. But Sure. Yes, all right, Fred, let’s go straight to my alternative pronunciation.
Nick van Terheyden 05:33
My might be the one that’s obviously incorrect. Now, you might be right, nitice I have lots of them, and I’m always in trouble for them. But that’s okay. Yes, I am, I think I buy into the notion that aging is a disease. And if we focus on that, and focus on preventing the underlying cellular degeneration, we can prevent many of the diseases that we see as chronic occurrences, you know, that would include the likes of cardiovascular disease, Alzheimer’s, neurodegenerative type things, diabetes, and osteoarthritis, all of that. And to be clear, I’m not making a direct link, I’m not advocating that this is science, I think there is very good evidence to suggest that many of these things may be linked at the cellular level. And based on that, if you could treat one condition and cure all those others, that would be really interesting. Be pretty exciting. Right for You, right?
Fred Goldstein 06:44
Oh, yeah, fascinating as we age. And interesting enough, I did take a course on physiology of the aging process back at Berkeley. And the professor at that time, was really interested in free radicals and their impact on cells and the damage to cells. So it’s interesting as the science develops, obviously, we learn more. So you did this partly out of your interest in actual longevity, and how and that area, but it also is something that would ultimately maybe benefit you and others, should they discover that this thing actually makes a difference?
Nick van Terheyden 07:14
Yeah no question. I mean, I think we all have two agendas, at least one is the personal agenda. And one is the, you know, the agenda for good and the closer those two align, I think the more united we are and sort of moving forward. And in this particular instance, I’ve got a personal agenda that says, Oh, just that I want, I It’s funny, I hear this from people. I don’t want to live a long time. Yes, I do. I do want to live a long time. But I do want it to be a healthy long time, I don’t want to be incapacitated. And those two are linked together. So I have a vested interest in trying to be as healthy and well as possible. And that’s connected with this, I’ve tried to sort of adjust my lifestyle, do all of these things. And this is this is on the outer edges. And if I can contribute to it and speed up the process, so that maybe this becomes an actual treatment. And that’s definitely not going to be possible if we go with the traditional speed of research. But if we go with the pandemic speed of research, there’s some real possible I’m, there’s probably some balance in there, but right, so there’s benefit for me, and hopefully benefit for many others. And you know, especially for the younger generation, that we might start seeing things differently.
Fred Goldstein 08:34
And you said something that is really fascinating in that comment, you want to live a long time, but you want to live in healthy, which gets back to James Fries, I think it was in the compression morbidity, where you’re saying, if we can keep people from developing those first sort of chronic conditions that lead up to chronic conditions, then, as one of my doctor friends used to say, I want to die rapidly in overtime, you know, and just hit that end and just go instead of as we see this long decline, where suddenly you hit a disabled point, and then you’re stuck for years living this life that may not be as joyful as it could be.
Nick van Terheyden 09:10
Yeah. And people that have been to some of my presentations will have seen my chart that references is very clearly and I talked about the fun, no fun path and that long decline and in and out of hospital is definitely the no fun path. And I’m going to point to a physician friend of mine who viewed his world as I don’t care what happens I’m going to you know very much slide into the end of life martini and hand chocolate in other having used up their body completely. You know, I don’t mean to make light of death, but you know, it, it’s gonna happen. It’s part of life. It’s, it’s there and they viewed it as that was the best way to go. Unfortunately for that individual, they did not slide in and developed cardiac disease and found themselves slowly unable to start walking up steps and walking up hills and has now had to go and have therapy or treatment, in this case, putting in some stents. And you know, that’s improved things. But you know, this idea that you can just run it, and then that’s not the way the body works. Mostly, there are some people that that’s true. I think for the vast majority of us it’s not and staying healthy is hard work. It just is.
Fred Goldstein 09:54
It’s part of life Absolutely, absolutely.
Nick van Terheyden 10:46
But what about you, I know, you’re into this, and you’re participating. Tell us your experience.
Fred Goldstein 10:53
Yeah, I took a like you too looked at this. And I saw as many may know, or some No, my father passed away from Lewy Body Dementia, a form of Parkinson’s. And a couple of maybe two a year or two after he passed away, I happen to see something on Facebook, and it said, Get a genetic test for Parkinson’s. And specifically, they were targeting a couple of genes teyt we’re looking for, that are certain that are associated with getting Parkinson’s. And I said it was the Michael J. Fox Foundation, you know, unless many people probably know Michael J. Fox has Parkinson’s, and it’s publicly announced and he’s formed this foundation done incredible research. So I went ahead and got the test. And sure enough, I show up with a one of the mutations, it’s associated with a higher incidence, there are a couple they look at the some of them are really strongly associated, this one is just moderately associated with it, apparently. And then they called me and said, Hey, look we’re doing is we’re doing a study. It’s the PPMI, Parkinson’s Progressive Markers Initiative. And what they’re doing is they’re looking for markers, biomarkers, and would you be interested in signing up and I said, for sure. And so I signed up and, and I’ve been in now, I guess, five years. And so when it first started, I fly to a clinic. And they fly me there. And they day and a half workup every year and then a half a day, and then a half a day, the other six month visit. And literally they do you know, blood draw. They do DAT scan, MRI, lumbar puncture, cognitive tests, smell test, behavioral walking, observing, checking your muscle tone, and if you have tremors, and they originally were doing this and looking for for both individuals that had Parkinson’s, or were at risk of Parkinson’s to identify these. And overtime, they’ve now expanded. And it’s been a really good experience for me, I’ve learned a lot. I’ve been able to feel like I’m doing something to help people. And I’m now actually on their participant committee. And we have a committee, small group of the participants who are helping them think through what’s it like to be a participant? How can we help get other people involved, and they’ve expanded the study. Now, I think they have 52 sites around the world, they just opened Lagos, Nigeria, the first site in Africa. And I think they recruited their first couple of patients two months ago or so. And they’ve now got an online study. They’re trying to get 100,000 people into that, and another study, and they’re sort of setting up this funnel, that they’ll that will help get people in and as they identify something, oh, you should be in the next level, you should be in the next level. So it’s been a really a good experience. I don’t get the data from the study, although we had some discussions about that the annual meeting that maybe they could say, here’s what this shows, but so far, according to the folks that had been doing fine. So I think it’s,
Nick van Terheyden 13:48
you know, it’s interesting hearing that, because one of the reasons that I jumped into this, you know, and it was personal, but also contributory. But there was some value in accruing my own data, because I’m, you know, something of a wearables monitoring, you know, as much data as possible to see what’s in there. And I do get my data that was a an important part. And you just described a bunch of things that, you know, supremely interesting, you’ve got five years of sequence data that’s, you know, consistent. I’m a little bit surprised to hear that they’re not. Is there a reason for that?
Fred Goldstein 14:25
some of It’s interesting, because, and actually, the study started in 2010. So they’ve got some really long term. And the other very unique thing about this is that that every single dataset is available to any scientist, you have to obviously meet the requirements, and you can download it, whether it’s the imaging scans or the others, and they’ve added data points and things over time. There’s some concern some people say, I don’t want to know
Gregg Masters 14:50
if you’re just tuning in, you’re listening to PopHealth Week on healthcare now radio, our guest is colleague and a transformational voice for innovative mission that matters by incrementalism, Dr. Nick Van Terheyden, aka Dr. Nick.
Nick van Terheyden 15:08
Right, but that’s okay.
Fred Goldstein 15:11
And so we sort of talked about was, we probably should look in the study of individualizing. And it may perhaps at each visit, you asked the person, would you like to know, would you not like to know, I’ve talked to a number of people more recently who either have a family member or a close friend who has Lewy Body Dementia, orParkinson’s, and they and or their family member did and they say, one of them said, I absolutely will not join a study like that. because I don’t want to know I have the gene, or the potential genes, whereas others have said, Yes, I do want to know, and it really raises some interesting questions, because at this point, there’s not a lot you can do about having Parkinson’s. And so a lot of people would be would be fearful to know now, in my case, I’d probably say, I would like to know, just so I can plan better. So I can inform my family, which is what my father did. He actually hid it for two years, from my mother, and another another health story. So my mother found out because my father got a denial for a med in the mail. And she opened it said, What the heck is this denial for this med for, and then he told her and, and he lived for about another almost almost 20 years with it after that. But he made it very clear and allowed him also because he had it, he knew, here’s what’s going to happen to me, here’s how to plan for that appropriately. Here’s how I’d like this to be handled. And and that helped a lot. It really did.
Nick van Terheyden 16:33
So I think in your case, and you know, this is interesting discussion about trials specifically and you know, helping people think through is this something that you want to and so forth in your particular trial? I guess I would sort of categorize it. And it doesn’t, it’s not quite Huntington’s Chorea as an example, which, for those of you that don’t know, maybe you watch House, that was the, I think her she was number seven or something that the physician and she had a historic family history, and it’s passed through family history, and it is absolutely terminal. I’m sort of, I want to say, 40s 50s, if I get this wrong, forgive me, it’s, you know, access data, but she declined or did not want to, and that ultimately came to know. And you know, when it’s that severe, there’s clearly some issues. And I think that was one of the reasons that 23andme got into trouble when they said, Hey, test your genes. Oh, my God, well, wait, I’ve got Huntington’s Chorea. I wasn’t ready. So there’s definitely that. But I think in your instance, as you described, this is not a definitive, this is a right,
Fred Goldstein 17:48
it’s a relative risk.
Nick van Terheyden 17:49
Increased risk.
Fred Goldstein 17:50
Yeah. And essentially, and it’s also, and so I think about this, and that’s one of the reasons why it can be difficult, because people, as we’ve learned with COVID, don’t have a good understanding of risk, relative risk.
Nick van Terheyden 18:01
No, No
Fred Goldstein 18:02
And so, you know, I looked at it and said, Oh, well, it goes from x to y, that’s bigger. You know, I’ll be I’ll be okay with it. With the with the testing for the genes. I think I should point out maybe that, and you could probably define this better than I can, but I’m not really in a clinical trial. I’m in a study
Nick van Terheyde18:18
right,
Fred Goldstein 18:19
cause they’re not testing any meds on me or stuff like that.
Nick van Terheyden 18:21
Right.
Fred Goldstein 18:22
Is that correct?
Nick van Terheyden 18:23
Yeah. I Yes, I think a differentiation. So that’s, you know, actual therapy. It’s a monitoring.
Fred Goldstein 18:30
Yeah.
Nick van Terheyden 18:31
But I mean, there’s the same impact of that, right.
Fred Goldstein 18:35
Yeah. What I what I loved is went to the first annual conference, and they’re discovering stuff. So one of the you think you’ll appreciate this, one of the guys came up and said, Look, there’s a huge link between the microbiome we should be studying, we should add the microbiome to this study and begin to get fecal data of what’s going on. And he presented on the difficulties I learned quite a bit listening to his presentation about the fact that it’s tough to compare microbiome because they’re different geographically.
Nick van Terheyden 19:04
Oh, yeah,
Fred Goldstein 19:04
depending on you know so if you have people in Seattle, in your study, and you have people in New York, you’re they’re gonna have different microbiomes. And but but they’re going to begin to figure out a way to look at that as well. And add that data, and the more data they can find, they are beginning to identify some things in the spinal fluid as you would imagine, and stuff. And I think that that’s going to allow them to begin to say, hey, we can pick this up earlier. We can pick it up earlier, maybe we know what some of the triggers are, and maybe we can start to work against the triggers and all that stuff.
Nick van Terheyden 19:30
It raises the issue, you know, that geographic differences in the microbiome is so important, and that’s true through the US but you know, worldwide and we see it, and I’m you know not not to make light of it. But I think it’s also part of the reason that New York Pizza tastes different. Because the construct of that pizza with the flat I mean, very simple ingredients, but they are actually different. And our challenge has been historically that we could not define or get to that detail because we couldn’t sequence fast enough. But we’re now at this rapid sequencing, it’s relatively I mean, we’ve seen that decline every showed the chart for years, you know, from the million dollars for the genome, down to, you know, sub 1,000. I think it’s, you know, even less than it depends on whether it’s a partial genome exome, so forth, that raises some huge, interesting questions. And, you know, can we start to gather this? And what will it mean? Don’t know, but, you know, that’s a good example of why trials are so important. Absolutely. The participation,
Fred Goldstein 20:36
yeah,
Nick van Terheyden 20:36
and, you know, assess the risk, you’ve got to take those individual decisions, I’ve made some very clear sort of thoughtful process, monitoring, and so forth. I’m not jumping into it without that, and you clearly have done the same thing. I think the, how I would sort of try and steer people is, think about what you’re looking, A, to get out of it, you know, What’s is it just I want to contribute. And that’s a good thing, I think, actually, you know, giving away a present is better than receiving it, this is the same kind of thing. So it’s going to be good for your general overall health I, there’s obviously going to be some potential downsides. So weighing up that. And then think about, I think, you know, as you describe for you, it’s a personal interest, it’s driven by your family, your father, you know, you want to see this both potentially, for yourself, potentially, for your family. And, you know, that’s good
Fred Goldstein 21:12
Sure
Nick van Terheyden 21:40
and for anybody, right It’s not just, but you know, it’s the marrying of those things. And that’s the same for me. I think having that personal drive helps. And, you know, that’s partially driven by me because my father had cardiovascular disease. He was oblivious to it. I don’t know, maybe he wasn’t oblivious. But I, so I’m driven. So I think, you know, what I would hope is people are listening to this and going, well, there’s positive has it been downsides? Well, I’ll tell you, when I had my medical school experience. I had a drug that was designed for nerve, I think it was nerve regeneration. And I got what I can only call Ataxia, I was falling over when I got out of bed, I had severe nystagmus My eyes were you know, flicking backwards and forwards. By the way. Those of you that don’t know, that’s one of the tests for drunkenness, you know, the sobriety tests, please, too. I had that severely. And it was a little bit concerning. But you know, resolved and the same with subsequence. So it’s not without risk, don’t jump into this. But it’s the contribution to humanity. And if we learned one thing in the pandemic, I wanted to get off the bench and participant for sure you everyone I was directing traffic’s vaccine, vaccine testing centers, because I wasn’t qualified to actually deliver a test.
Fred Goldstein 23:12
Right. It’s and and I think, if anything, COVID showed the importance of being involved, all of the people who are involved in those trials for the vaccines, right, you know, testimonies. And, and I would say,
Nick van Terheyden 23:27
I volunteer for that, did you?
Fred Goldstein 23:29
I did not? Interestingly enough. Yeah, actually, I know that there were some places show up later in Jacksonville.
Nick van Terheyden 23:36
Yesh there was one locally, Hopkins
Fred Goldstein 23:37
but I did not. That’s a great point. I remember you talking about that. And I think as you point out, people should think about, this may be not for you, it really I mean, it’s a different thing. But if it’s of any kind of interest, take a look, look at an area that, that, that is of interest to you, or important to you. I know that I posted this up on LinkedIn, and some person I’ve never met, wrote back and said, I signed up.
Nick van Terheyden 24:00
That’s very cool.
Fred Goldstein 24:01
And there are a couple I know about five people now that have signed up through through hearing about it. And hopefully this study or any other study makes a difference. And that’s I think, at the end of the day, what we’re trying to do. So, you know, for each person out there, if it looks like it’s something interested in explore it a little bit, check it out, may not be Parkinson’s, maybe asthma, maybe something else, like you’ve done with this longevity, I think that’s an important area, it’d be great to see stuff that would help me or others as we tried to have a healthy life through the remainder of it. So
Nick van Terheyden 24:32
yes, for the proportion of the population that wants to live longer and healthier. Woohoo, those of you that are saying no, well, probably not going to be interested. Now, please explain to me why that’s the case. I don’t fully understand but that’s okay.
Fred Goldstein 24:46
So, are there any other areas you think might be of interest to you, as you look at this or
Nick van Terheyden 24:52
as I think about trials and clinical?
Fred Goldstein 24:55
Yeah
Nick van Terheyden 24:55
Oh, absolutely. I mean, I think one of the you brought out one than the biome, I think is this undiscovered territory that, you know, I know personally, my biome has huge impacts on my overall general well being, I can feel it. And, you know, we’ve gone through this process of giving people taken antibiotics for a sore throat, you wipe out billions of bacteria in your gut. And we had no idea what that was doing. I think that’s a, you know, fantastic place, cause it’s poop. So nobody wants to get involved in that. I don’t care. I think there’s tremendous opportunity in gathering that data. So that’s one. I think, obviously, health and fitness, wellness, you know, exercise, I see lots of work and, you know, people advocating high intensity workouts. Have you seen this concept of restricting blood flow? That seems really weird. It’s a value to that. I just don’t know. But I’d love to see more of that. I’m, I’m all in if I can participate and contribute. I love doing this kind of thing. Because that’s me.
Fred Goldstein 26:05
Yeah. No, it’s really fantastic. And I think hopefully, it leads to something. And I think most of them will, whether it proves that something didn’t work. You know,
Nick van Terheyden 26:15
that’s right. Yeah. It’s not just about the success. It’s also about the failures. And that’s one of the things that you should look for in the trials, to make sure that they’re publishing the data as part of trial is a clinical trials.gov, I think is as long as it’s registered there. It’s a proper registered trial. Because this idea of not Oh, it didn’t work. So let’s just bury that data is a really bad thing, because then somebody else may repeat it, let alone the fact that we might have waste from all of that data.
Fred Goldstein 26:44
Absolutely. Absolutely. Well, thanks so much again, Nick. It’s always wonderful to get you on the show. Really appreciate it. Yeah.
Nick van Terheyden 26:51
And thanks to you for participating in the trial. And hopefully this encourages some of the folks that listen to your show. To think about it, look at what’s going on in hte world
Fred Goldstein 27:01
absolutely and back to you Gregg
Gregg Masters 27:03
and that is the last word on today’s broadcast. I want to thank our listeners for tuning in and our special guest Dr. Nick Van Terheyden principal in the Washington DC Office of ECG management consultants, a popular voice in the HealthcareNOW Radio lineup of hosts for more information about Dr. Nick’s work, go to www.incrementalhealthcare.com and do follow his work on Twitter via @Dr Nic and the number 1.net and @ ECGMC respectively. And finally, if you’re enjoying our work at PopHealth Week, please like the show in the podcast platform of your choice. Share with your colleagues and do consider subscribing to keep up with new episodes as they’re released. We stream live on HealthcareNOW Radio weekdays at 5:30am 1:30pm and 9:30pm. Eastern and for you left coasters 2:30am 10:30am and 6:30pm. Pacific for PopHealth week, my co host Fred Goldstein. This is Gregg Masters saying please stay safe everyone. Bye now.