A Physician's Journey as a Cancer Caregiver

Samira Daswani (00:01.456)
Hey everyone. This is Samira Daswani, the host of the podcast, The Patient From Hell. I have a very cool guest with us today. I think JL has lived many, many lives and I think he's here to tell us at least a few chapters. Welcome to the podcast.

Jean-Luc Neptune (00:17.678)
Thank you, Samira. I appreciate the invite and I love the name of your podcast, The Patient from Hell. That's great.

Samira Daswani (00:24.4)
Thank you. There is a nerdy story behind it. And if you'll indulge me, I'll give you a snapshot into it. It's not as cheeky as it sounds. It mostly is, you know, me reading a book called The Patient from Hell. When I just got diagnosed, it was written by a rare cancer survivor who happened to be a researcher at Stanford. And he essentially argues in his book that medicine, at least as it is practiced in the US,

Jean-Luc Neptune (00:27.022)
Okay.

Jean-Luc Neptune (00:31.534)
I love it.

Samira Daswani (00:53.04)
practices according to cohorts or groups of patients. And if you are a patient that has any sort of outlier that makes you not part of a regular cohort, the vast majority of clinicians don't know what to do with you because medicine is just not practiced that way. And the ability to do empiric based treatments, i .e. personalized treatment physician medicine, it's all very new.

And if you want to get any amount of that, you have to advocate for yourself. So that's the little mini version as to why it is called The Patient from Hell. It's not just about driving our clinicians crazy, you know.

Jean-Luc Neptune (01:29.422)
I got it. Understood. And you know, it's funny, I had that discussion with somebody the other day. I said, if you are an off pattern patient, in other words, because remember so much of what we do as doctors is take care of patterns, right? Somebody comes in with chest pain, shortness of breath, sweating, they're having a heart attack. If they have a cough, fever, and sputum production, they have pneumonia.

But if you come in with like a pattern that we're not familiar with, it can be really difficult. And, you know, if you think about HIV in the early days, docs didn't know what that was, you know? If you think about people who have things like fibromyalgia and diseases like that, those are very difficult diseases to manage. And patients, as you said, like often have to really advocate for themselves to try to find a solution if you don't fit a pattern.

Samira Daswani (02:17.916)
I think you should tell us your background, if you're okay with it.

Jean-Luc Neptune (02:21.454)
Sure, happy to. So I am a physician by training and I always view myself as a physician first and foremost. My dad was a physician, so it sort of runs in the family. But I've taken the road less traveled since finishing my residency and have done for the last 20 years have been involved in the digital health space, digital or health innovation more broadly. I've been a company founder. I've been an employee, early employee at innovative companies. I've been an investor and I've

been an advisor and I have also been the caregiver for my two parents who were diagnosed with cancer three months apart from each other and it took me on a very interesting and educational journey with regards to cancer and you know engaging in our healthcare system.

Samira Daswani (03:10.704)
Because we're a cancer community, we may have to go there if you're going to talk about it. Can you tell us what happened and when your parents got diagnosed?

Jean-Luc Neptune (03:15.374)
Sure.

Jean-Luc Neptune (03:19.79)
Sure, so, you know, my parents, so let's rewind to January of 2013. So this is when this begins. So in 2013, my mom casually notices that she has a pretty large lymph node under her arm. And that lymph node would be the signs of a breast cancer diagnosis.

So, you know, my mom notices the breast, the node in January 2013, probably two weeks later, they're doing a biopsy and diagnosing that she did indeed have breast cancer and a pretty advanced breast cancer at that. So, you know, my mom went, you know, through the traditional treatment of chemo and surgery and radiation and all that stuff.

And you know in at the beginning of 2013 we were sort of unified as a family to take care of my mom and that was my sister my dad and myself And then my sister had been spending a lot of time with my parents. She had – she was sort of between jobs and was spending a lot of time with my folks and in April of 2013 my sister says you know there's something wrong with your dad. You know, it's not it's not clear, you know, but he's not himself As I said, my dad was a physician very sharp, you know, and there was definitely something going on with him.

And I remember going to see him at the house that I grew up in and just doing a casual exam, like, hey, dad, I'm examining you without examining you. And I thought that he had what looked like a facial asymmetry that I thought could be consistent with a stroke. And that would be the kind of thing. You're 70-something years old. My dad had diabetes, and he had hypertension. I said, OK, well, maybe that's the more likely thing that he's had a stroke. And then it took me, you know, know,

weeks to sort of figure out how to get in contact with a, to come up with a plan, let me back up, to get him worked up because like I couldn't get an appointment with a neurologist. Primary care docs were pretty much useless in this regard in terms of working him up. And I said like, you know, I think I'm going to have to take him to the ER and see if I can get him scanned in the ER.

Jean-Luc Neptune (05:30.254)
So I took him to the ER and he got a CT in the ER and that CT showed a very large brain tumor. And at that time he had a nine centimeter or centimeter as we like to say as docs, glioblastoma. And so within the course of three months, I found out that both my parents had cancer. And to rewind that story, my dad did get treatment, he had surgery, he had at least one, we gave him one try at chemotherapy.

And he lasted 19 months and he passed away less than 19 months, but he passed away in October of 2014. And my mom is now 10 years out and doing well and 85 years old. And as I've always told my mom, we have longevity that runs in my family. And I've always told my mom, you'll probably live to be 100 years old. So at least for my mom, it's turned out to be a good experience and something that she's recovered from before.

Samira Daswani (06:30.032)
Wow, that is quite the experience your family went through. We heard a lot of cancer stories in the line of work we're in. The part that strikes me as the most dire almost is you have two physicians who spent two weeks trying to build a treatment plan.

Jean-Luc Neptune (06:34.382)
Mmhmm.

Jean-Luc Neptune (06:54.478)
Thank you.

And it was probably less than two weeks. It was probably more like a week or so. But again, it was like a week of trying, of racking my brain and, you know, making phone calls and talking to people and realizing like, I'm not going to get an answer here unless I figure out how to get, I basically hacked the system, right? I knew like the place that he could get a CT scan to give me a diagnosis. Because again, I'm a physician, so I'm sort of coming from a place of knowledge. Like I have an idea, I have a differential

diagnosis about what's going on. But I essentially hacked the system and I said, okay, where can I go to get a CT scan? And it's the ER of the local hospital in the town that I grew up. I grew up in Teaneck, New Jersey, which is in Bergen County, New Jersey. So just over the GW bridge.

Samira Daswani (07:35.984)
Where'd you grow up?

Samira Daswani (07:43.376)
JL, can you talk about how you hack the system?

Jean-Luc Neptune (07:46.958)
Well, again, I mean, you know, I think for somebody who encountered what my sister encountered, right, which is an elderly person, something's wrong with that person, I don't know what's going on. You know, typically what you would do is you'd call your primary care physician if you even have one, and then you try to get an appointment. You probably have to wait a couple weeks to get that appointment.

Your primary care physician would say, I have really no idea what's going on, but maybe it's a stroke, maybe it's something else. That primary care physician might have sent you to see a neurologist, who knows how long that would have taken. And probably from the time that you make the observation that somebody is not themselves to actually getting scanned and getting a diagnosis, that could have easily been three months, right? Easily,

assuming my dad hadn't decompensated in that time and gotten significantly worse, but could have easily been three months to get to that answer. And again, because I'm a physician, I knew sort of, okay, what could possibly be causing this? So that's one thing that sort of allowed me to hack the system a little bit. I knew that what the diagnostic test was going to be, right? And I had a basic idea of where I could get that diagnostic test. And again, like,

Samira Daswani (09:03.796)
Yes.

Jean-Luc Neptune (09:05.102)
what I did is absolutely not the way you should be doing it, but it's the way that I sort of had to figure out an answer because, you know, the traditional way, I – it would have taken forever.

Samira Daswani (09:15.952)
In your, in your sort of like, we were going back and forth on email, one of the things that you wrote in there was access to information is really difficult. So how do you...

Jean-Luc Neptune (09:25.902)
Sure, so access to information, I meant that in a couple of different ways. So first, access to information about a diagnosis. Like once you get that diagnosis of a glioblastoma multiforme, right? I mean, for most people, they know that that's a bad diagnosis to get. And if you get that diagnosis from a doctor, all of a sudden, you probably end up on the internet looking for information, going to random sites.

And random sites that are giving you information without necessarily the context of your patient your person so one of the ways that I got information is I actually, I didn't spend any time on the internet reading at all, right? I didn't because I knew that I wasn't gonna get anything useful, so what I did is I called a friend of mine who was a classmate in medical school who is a neurosurgeon in the town in the nearby town that I grew up in

and had a 15 minute discussion. And because it was sort of doctor to doctor, I was able to get my questions answered and really understood, got an understanding of what the prognosis was, what the treatment plan was going to be, what our options were. And again, so being able to, I think there are, I've debated, often debated with people online about like, okay, access to information. And really as a patient, should you be like going on the internet and looking at all these sites? And my argument is like,

you shouldn't because you know, unless you can contextualize this information, make it specific to you and cut out all of the noise from the signal, you're probably only making yourself more stressed out, more confused by seeking information from all these places. And usually what you want to do is talk to an expert who has knowledge about your condition, who has the time. And that's the big issue, right? Most doctors don't have the time to sit down. My friend, a great guy named Kevin Yao, you know,

he was a buddy of mine from medical school and he said, hey, I'll sit down and I'll talk to you for 15 minutes for free, but it's really difficult to get access to that kind of information. And I think that's one big failing in our system. The other thing is, you know, my dad had a huge amount as my mom as well, a huge number of encounters with the healthcare system in that, you know, 18 month journey and all kinds of data that gets generated, all kinds of paperwork that you get sent.

Jean-Luc Neptune (11:45.07)
All kinds of information that's available at your EMR and again, it can be easily overwhelming and what I did and I've explained this to many people before is like you can show me 10 binders worth of information. Usually you can summarize it down to a three by five card that you can carry around that carries, you know, essentially the the key problems, most recent significant events, the medication list, the allergies. That's really all you need, but most people don't know that.

And most people, I've seen this many times, certainly when I was a physician, people walk into a doctor's office and they've got a thousand sheets of information about their medical treatment and they don't realize that when you're engaging providers, that's really not helpful because who has time to go through a thousand pages?

Samira Daswani (12:33.776)
So I want to go back to something. I think the way you describe the problem is completely true, right? Like the thing you really want and need is to talk to that expert. But getting access to that expert is honestly near impossible.

Jean-Luc Neptune (12:49.614)
Mmhmm.

Samira Daswani (12:50.768)
And if you're not a physician, and sometimes, honestly, we've met physicians who have not been able to access, other physicians do. If you're a physician in the middle of the country, you may not have the network of the specialist who knows about the super rare type of cancer your patient may be dealing with. So in the absence of that, what do you do?

Jean-Luc Neptune (12:58.83)
Good.

Jean-Luc Neptune (13:12.562)
So I mean, look, I recommended before and this is another hack and this is a hack that is not available to probably 90% of Americans, but you should think about hiring someone, right? And, you know, literally there are doctors that I know. So first you have your concierge layer of doctors. So, you know, concierge doctor is a doctor who will take a direct cash payment from a patient. So rather than going through insurance and provide you

more time than your typical doctor would. So just think about your typical primary care doctor might have a census of 2,000 or 3,000 patients. So there's only so much time that he or she can spend with all those patients. Whereas a concierge doctor might have a census that is 100 patients or 200 patients or 300 patients. And as a result, they're able to spend more time with you. There are a whole range of price points for concierge medicine, anywhere from 1,500

dollars to I know a doctor who has a hundred thousand dollar a year price point. So again, when I say it's not available to 90% of Americans, that's what I'm talking about. Most people can't afford to spend even $1,500. But I think it's the kind of thing like if you're paying somebody to go out and and do the research for you and and and make phone calls and pull it all together, I think that can be something that's very valuable and very useful. But again, not accessible to most people.

Samira Daswani (14:20.72)
Thank you.

Jean-Luc Neptune (14:38.318)
If you're not in a position to spend, I mean, you know, I think directly reaching out to people via email and, you know, seeing seeing they'll respond to you could be something that you can try. But again, you know, I think most doctors are very busy. They don't really have a lot of time and the system is not built for that. The one exception I will say is that some organizations do have health navigators. So I would say some of the more, the organizations that are more ensconced in value-based care,

Samira Daswani (14:58.48)
So.

Jean-Luc Neptune (15:07.47)
that are thinking about the patient, the whole patient, thinking about a team-based approach. Sometimes you'll see healthcare navigators and coaches that exist in some of those systems. And you can try to access some of those people. You're probably not gonna talk to a doctor, but you may still speak to a knowledgeable expert who might be an RN or some other type of person. But it really depends on where you are. And I would argue markets like New York and Boston,

Samira Daswani (15:14.064)
So I think we have to give them a little bit of a push as they exist in some systems.

Jean-Luc Neptune (15:36.43)
don't have those kinds of people for the most part.

Samira Daswani (15:39.663)
I wanted to go on a slightly different track because the other thing that strikes me about your self experience is you have your sister and you, you have one parent been diagnosed with breast cancer, sounds like curative intent setting. You have another parent who has been diagnosed with abdominal type of cancer that in a very, very different chapter, right? And you guys are managing both

super, super tactically, how did you and your sister manage that? Like what did you guys set up? Like very practically, because I think part of what I'm trying to get to is we have a lot of caregivers who are in our community. And very often we focus on the patient a lot. And we don't actually give enough information to the caregiver on just like super practical things. Like how did you divide time? Were you guys working? Were you not working? How did you guys manage taking care of two people,

Jean-Luc Neptune (16:08.622)
you

Samira Daswani (16:33.584)
versus one, like just give me some, just maybe help us.

Jean-Luc Neptune (16:36.686)
Sure, sure. And again, some of these tips are not going to be relevant to the audience because they can't do what we did. So, you know, as I said, my sister was between jobs, so she had the ability to be there on a regular basis, again, in the house that we grew up in. I ended up taking like six months off from work, especially during that intense period, just so that I could be there for my parents. At the end of the day, for my career, I don't know if that was the best decision. But in terms of...

taking care of my parents and providing them like world-class care. You know, remember I trained at a top tier academic medical center and they had at their beck and call, you know, an academically trained internal medicine doc who was coordinating literally every step of the way, right? So I attended every doctor visit for months, you know, I, you know, was putting together these three by five cards, you know, making sure that everybody had information coordinating across providers. Cause again, my dad was like,

you know, had an oncologist, but he also had an ophthalmologist. He had a cardiologist. And the interesting thing is we could not find a primary care doctor to take care of him. Right. Now, many times people will say that the oncologist is supposed to be the primary care doctor in this situation, but our guy really wasn't, you know, and as a result, I ended up doing a lot of the primary care stuff. My dad also had to see a neurologist as well. So like coordinate.

Samira Daswani (17:43.888)
Hmm.

Samira Daswani (17:49.584)
Huh.

Jean-Luc Neptune (18:05.326)
coordinating all that stuff, I was doing it myself. And my sister really and I together doing a lot of shift work to manage our parents and accompany them and support them through their cancer journey. But again, as I said, a lot of people don't have access to those resources and it's tough.

Samira Daswani (18:26.416)
Why couldn't you find a primary guy doc?

Jean-Luc Neptune (18:28.494)
You know, most of the primary care docs that we saw, or at least in our community, we weren't, I was the concierge doctor, right? So we were just trying to use my, we didn't want to pay for two concierge to care doctors. But we were seeing docs who, you know, really didn't, weren't comfortable with my dad's level of acuity. So like, you know, when you describe, hey, I'm a new patient, would you be interested? You know, can we see the doctor? We just found that like most docs,

were not really interested. We went to see like one or two docs and it's not like they wouldn't see him the first time. They would see him, but then afterwards they're like, well, we don't really have the time to address all these different issues. Like this is a very sick patient. And it's true, my dad was quite sick, but we just were never satisfied with any of the primary care docs that we interacted with that they were thinking through the case. They were like, I felt like most of the primary care docs were like, you get one problem to focus on today

and that's the diabetes or the hypertension, but we can't really spend a lot of time focusing on everything.

Samira Daswani (19:34.627)
Sorry, I'm going to play back what I'm hearing from you because it sounds like there are two issues. There were two things you guys stumbled into. That was from your lens, the primary care doc didn't have the time. And I don't think you said this, but maybe there's an undercurrent here. So I'm just going to say a couple of words and you can correct me. They may not have had the expertise to manage a patient like your dad.

Jean-Luc Neptune (19:36.462)
Okay.

Jean-Luc Neptune (19:40.174)
Sure.

Jean-Luc Neptune (20:01.294)
I'd say it's more the former than the latter. I'd say, you know, most of those docs, if they had time, they could have done a great job, right? I mean, most of them were trained to my level of training. So I, you know, it's not like they were not intelligent or not well trained. I think they could have done a great job. It's just when you're juggling patients and you know, you're, you're trying to run a medical practice, which is really an obsolete, the traditional medical practice is really an obsolete business in my view.

And you're trying to keep that business afloat by spending seven minutes or 10 minutes maximum with each patient, if you get a guy walking in who's post-op after a brain surgery, he's getting chemotherapy, he's got hypertension, he's got diabetes, he's got a bunch of other things going on, it's very difficult in 10 minutes to be able to

I think do a good job in terms of managing all those problems. And I feel like people were rushing through and as I said, focusing on like what's the most important issue today. And my point always was like, everything is important because everything is tied together. So I think that's the challenge. I just don't think that the traditional primary care outpatient environment is well suited to dealing with very sick patients and patients who have a lot of medical burdens.

Samira Daswani (21:26.288)
So while all this is happening to your dad, what's happening to your mom?

Jean-Luc Neptune (21:26.67)
All right.

So, you know, again, my mom is in inactive treatment. You know, my mom is getting chemotherapy and my mom is getting radiation treatment at the same time that my dad is getting his care. So I have some pictures actually of my parents together. You know, it's like the, you know, they both been, you know, it was a day where they had both gotten treatment and, you know, they're they're happy. They're miserable, you know, and it's just really tough to.

to have cancer on your own, much less the person that you've been married to for 35, 40 years also have cancer.

Samira Daswani (22:12.656)
Hmm.

Samira Daswani (22:16.336)
So, post 2014, what happens to your life?

Jean-Luc Neptune (22:21.07)
Post 2014, well actually, post 2014, I would say we sort of went back to at least being a little more normal. Obviously, my dad passes away at the end of 2014 in October. Just in terms of, I'll give you another story as it relates to my dad. I always say that I saved UnitedHealthcare a million dollars in terms of my dad's care, right? Because I kept him out of the emergency, we kept him out of the emergency room.

You know, he only had like one or two small rehab admissions because he was getting steroids and the steroids, sometimes we had to titrate the steroids up and down and it's an imprecise kind of thing. So he had to end up going to rehab a couple of times, physical rehab. But we kept him home until seven days before he passed away. And he spent a total of seven days in hospice and died after only seven days in hospice. So.

I think we did a great job of taking care of him. My mother had always questioned whether we did the right thing. I don't think we could have managed it any better in my view. And so my dad passed in 2014. And then by the end of 2014, my mom was pretty much fully done with her treatment, had fully recovered, and has done very well since then. And as I said, that's like 10 years coming later this year.

Samira Daswani (23:46.832)
Congrats to your mom. 10 years is a huge milestone. So that's a... I'm hoping you guys get to celebrate that a little bit.

Jean-Luc Neptune (23:48.302)
Thank you.

Jean-Luc Neptune (23:56.462)
We will, definitely. And it's something that I always remind my mom when I see her. I was like, you're blessed and you've had a great outcome and you will almost certainly die of just being an old person as opposed to dying of this breast cancer. So something that I'm happy about. And then, as I mentioned before, in terms of me, I went back to work, but it's interesting. And I think that this is a relevant topic probably for the audience is that this can really cause disruption in your career and sort of take you out of a job that you met –

may have been a good job for you. And for me, I've continued to work in the space that I'm working in, in the health innovation space. But I definitely feel the impacts of that time that I took off of work.

Samira Daswani (24:40.272)
How does it manifest for you?

Jean-Luc Neptune (24:42.734)
You know, I think it's just, it manifests in the sense that I think I was on a certain path and then sort of got diverted to another path. And, and not that to say that it's not, hugely disruptive, but I think that, you know, I ended up going more in an entrepreneurial path because that allowed me to have a more flexible kind of lifestyle. Like, so for instance, I know you worked at McKinsey, right? Like, you know,

I couldn't have been a McKinsey consultant at the same time that I was taking my parents to appointments, right? I couldn't really had any other kind of structured corporate job if I were doing what I was doing for my family, you know? And again, I sort of more opted to do more of an entrepreneurial kind of thing, which has sort of put me down an entrepreneurial path. And sometimes it can be difficult. Like I'm in the midst of a job search now. It's sort of challenging when you're an entrepreneur.

and to have people understand how entrepreneurial skills transfer to other kinds of corporate environments. It's out of scope of this discussion, but I definitely feel like that decision led me down a certain path.

Samira Daswani (25:55.696)
I appreciate you sharing that. We've been doing rapid fires, which is essentially me asking you a series of questions. They're mostly going to be what and how questions, short snappy answers. And we've just learned that our community likes the little tiny video once in a while. So it allows us to cut this part of the episode and give them the bite-sized piece of information.

Jean-Luc Neptune (26:09.23)
Okay.

Jean-Luc Neptune (26:23.822)
Okay?

Samira Daswani (26:25.424)
Given your background, I suspect you will have absolutely no issue answering any of my questions. But if you ever have to be like, eh, I don't want to answer that, you can just, yeah. Next up. You ready? OK. What is glioblastoma?

Jean-Luc Neptune (26:29.486)
Okay.

Jean-Luc Neptune (26:33.678)
Sure. Yep.

Jean-Luc Neptune (26:40.017)
A glioblastoma is a type of cancer that involves, that affects the brain. It is generally a pretty aggressive cancer that we do not have very good treatments for and probably one of the most, the poorest prognosis cancers that exist right now and hopefully something we can figure out how to treat better in the future.

Samira Daswani (27:04.016)
What is prognosis?

Jean-Luc Neptune (27:07.589)
Prognosis means, you know, what are your, how will things turn out, right? Like, you know, what is your likelihood of recovery? What is your likelihood of getting better? Yeah, you know, what you should expect.

Samira Daswani (27:21.968)
What is hospice?

Jean-Luc Neptune (27:24.59)
Hospice is a type of care that is delivered to people who are in the terminal stages of their lives because of their disease, as driven, as mediated by their disease and the goal of hospice is to make people comfortable and to Shepherd them through the end of life in the most comfortable human way possible

Samira Daswani (27:49.008)
What is palliative care?

Jean-Luc Neptune (27:51.854)
Palliative care. So palliative care is a type of care that is designed to reduce symptoms associated with a particular disease, generally more like diseases like cancer. But palliative does not necessarily mean end of life, right? So palliative care, from what I understand, and I'm not an oncologist, but is a type of treatment that you can use on people even though they may not have a necessarily terminal diagnosis.

Samira Daswani (28:21.424)
What is a differential diagnosis?

Jean-Luc Neptune (28:24.782)
So a differential diagnosis. So as a physician part of your job is to

figure out what is wrong with somebody. And when people come to see you as a physician, they will come with a story of what's going on with them. They'll come with a series of complaints. Those are what you'd call symptoms. There are things that you will discover on physical exam. Those are called signs. And when people come to you with signs, symptoms, and a history, your job is to decode that and try to figure out what are the things that could be

going on, what's possible here. So that is called the differential diagnosis. And then what you do is you do a series of tests or procedures that allow you to confirm or prove or disprove items in the differential diagnosis list.

Samira Daswani (29:18.288)
What is a decompensated patient?

Jean-Luc Neptune (29:22.19)
A decompensated patient.

Jean-Luc Neptune (29:27.726)
In any human system, in the human physiological system, we have sort of an equilibrium, right? Sort of people are able to maintain a status quo, whether let's say you have a lung issue or cardiac issue. And so you are compensating for your disease. Your body is reaching an equilibrium in response to the disease. Decompensation refers to the fact when your body can no longer compensate

and maintain an equilibrium because of the disease. So for instance, people with heart failure, decompensation with heart failure might be a rapid decline in heart function. Decompensation with somebody with pulmonary disease like COPD might be a rapid reduction in lung function because of the disease.

Samira Daswani (30:22.0)
What is fee for service?

Jean-Luc Neptune (30:27.022)
Fee for service is the predominant model for financing healthcare services in the United States historically and to date. It's a model in which doctors or any kind of provider is paid on a per piece basis. So you're paid for a procedure or paid for some piece of work that you do. It's a system that emphasizes quantity over quality, to some extent encourages waste,

and is a system that we're trying to move away from.

Samira Daswani (31:00.272)
What is value-based care?

Jean-Luc Neptune (31:02.254)
So value-based care is typically positioned as the opposite of fee for service. So value-based care is more focused on outcomes and sort of the outcome of treatment and associated with that focus on quality, efficiency, and cost savings. We've probably been talking in the public consciousness about value-based care since at least 2010. We've probably been talking about it for much longer than that.

And it's still very early in the value-based care world, but it does feel like we're moving in that direction.

Samira Daswani (31:34.736)
Okay, what is one piece of advice you would give a clinician who is just graduating from med school?

Jean-Luc Neptune (31:43.054)
boy. What is one piece of advice? I'd say...

Be flexible in terms of what your expectations are for where, how you're gonna work in the future. Because I think that the system is, I don't know if it's necessarily at a tipping point, but we definitely are in the process of moving from this fee for service model to the value-based care model. And the way that you are trained as a medical student and a resident, as a resident may have been heavily focused on training you to adapt to a fee for service model,

as opposed to a value-based care model that involves, I think, requires very different skills, very different knowledge, and very different responsibilities for providers. So I think maintain flexibility in terms of your mindset and understand that this transition is happening and that the people who may have trained you may really not know much about the system that is going to be the system that you choose.

Samira Daswani (32:51.152)
What is one piece of advice you have for a patient who gets diagnosed with cancer today?

Jean-Luc Neptune (32:58.409)
You know, I think educate yourself as much as possible, right? Try to, you know, use a breadth of resources, realize that, you know, often, you know, again, experts are going to be the people that you want to talk to. I am a believer that expertise exists in a variety of different ways. So you can be talking to licensed experts like doctors and nurses and other people.

But I do think that there is a community of patient experts. Certainly anybody who's been through your particular diagnosis can be an expert and can be very helpful to you. And I think, you know, be active, advocate for yourself, ask questions. And I think, you know, as often as not ask, why are we doing something rather than what are we doing? I think that that's a much more important question. And if you understand the why, you can often better understand the what.

Samira Daswani (33:55.152)
What is one piece of advice you would give a caregiver to a cancer patient?

Jean-Luc Neptune (34:01.169)
The caregiver, I'd say, again, keep it simple. Know the story, have your three by five card, and make sure you communicate effectively with your providers. And do things like bring your providers, if you bring cookies to the doctor, you're gonna get more time, right? Be, be.

make yourself an ally of the people in that office, right? And that's everywhere from the doctors to the nurses to even the front desk staff. And I think that the worst thing, you know, it's a very, obviously a cancer diagnosis is a very trying diagnosis. I think people can have a really hard time emotionally and sometimes end up projecting that negativity, that negative feeling, not negativity, but that negative...

those negative emotions onto other people and remember your providers, the provider team at the end of the day they're human beings as well. And the more they like you the better. They'll treat you and I hate to say that but it's it's a true statement

Samira Daswani (35:08.048)
I love that. that is such good advice. It's actually very good advice.

Jean-Luc Neptune (35:11.586)
Thank you.

Samira Daswani (35:15.344)
Okay, last question, full circle, back to the top. What is an off pattern patient?

Jean-Luc Neptune (35:17.486)
Okay.

Jean-Luc Neptune (35:21.326)
An off pattern patient is somebody who is presenting with a series of signs and symptoms that are not well defined in the literature or in the experience of physicians or the provider community. Somebody who has something that we can't explain, that we don't understand. And unfortunately, all too often we end up telling people that those things are in their head.

Whereas sometimes they are often actually very real, probably more often than not, and require further exploration but if the provider doesn't know what's wrong with you, sometimes they don't know what to do.

Samira Daswani (36:05.584)
Thank you so much, I really appreciate you. That was a phenomenal rapid fire round.

Jean-Luc Neptune (36:11.374)
Okay, well thank you.

Samira Daswani (36:13.68)
Any parting thoughts, first?

Jean-Luc Neptune (36:16.402)
So what is so I mean, maybe this doesn't end up in the show, but give me a thought about like, what are your goals for the podcast? What? I mean, as I said, I or as you know, I did a podcast myself. We did 20 episodes over the course of 2022. Unfortunately, the company that we were doing the podcast with ran into some hard times. So we stopped doing the podcast. But what we were trying to do is sort of like a kitchen confidential for health care

and helping patients and providers and other people just understand how healthcare really works. So I learned a lot. What are you trying to do? What's your goal?

Samira Daswani (36:54.544)
It's a good question. We have published, I think as of last week, episode 65. I think this recording will probably go up in a couple of months. The goal honestly initially had been to tell stories. And over time, what we realized that we kind of fell into it, is a mix of science meets humanity. And I think for us, it's just about shedding light on the parts of the experience that we don't talk about.

Jean-Luc Neptune (36:59.886)
Mmhmm.

Jean-Luc Neptune (37:16.206)
Okay.

Jean-Luc Neptune (37:22.126)
Mmhmm.

Samira Daswani (37:23.056)
We don't talk about physicians who struggle to get diagnoses done. We don't talk about caregivers having to take six months off from work, regardless of privilege, to care for their parents because you have two parents who are diagnosed at the same time. We don't talk about how switching from fee for service to value-based care is going to change how clinicians treat. We don't talk about these things, at least not enough.

Jean-Luc Neptune (37:50.702)
You

Samira Daswani (37:50.928)
And definitely not in a way that enables the vast majority of us to engage. So the goal is to take the complexity of healthcare and slowly chip away at it and start explaining it and provide actual information that can be made into knowledge. Because I think we're in the business of information. We're not in the business of knowledge. And I think we need to give patients and families knowledge. And if you give them knowledge,

I think it changes how you experience cancer.

Jean-Luc Neptune (38:24.046)
For sure. And one thing, we didn't mention this before, but I think so much in cancer, so much of the anxiety that cancer creates is just the uncertainty about what to expect, okay? And it's funny, and I say that because I have a friend, a good friend of mine, a guy named Mike Rose, who used to be the general manager for an online brand called What to Expect When You're Expecting,

Samira Daswani (38:37.648)
Yes.

Jean-Luc Neptune (38:51.566)
which was a content site, everyday health content site for pregnant women and women who were expecting. And a big part of the title of the online property was just helping people to understand, like, this is step one, this is step two, this is step three. These are the things that you should expect as you go along. And I think that giving that to cancer patients would be very valuable because, again, I just think that most patients...

Samira Daswani (38:54.192)
Yeah.

Samira Daswani (39:11.28)
Yes.

Jean-Luc Neptune (39:20.046)
don't understand what to expect, but the providers understand what to expect, but don't necessarily understand that the patients don't understand. And I think that the more you can have, the more structure you can have as you pursue your treatment, the more you have an understanding of like, okay, this is the next step, this is what's gonna happen. I think the better that you'll do. There's a woman named Linda Vadat. She's a breast cancer, breast oncologist. She's at, I think she's at Cornell now, but she was at Columbia when I...

And I just remember, again, this is partly because we were friends and she was willing to give us more time, but she sat down and she drew a flow chart of like, okay, this is where you're starting. Okay, these are your options, okay? 50% of patients do this, 50% of patients do this. Okay, after you get to this point, these are your next set of options and this is the next thing that you should expect. And these are the questions that may arise out of that.

Samira Daswani (39:54.064)
Yeah.

Samira Daswani (40:10.136)
Thank you.

Jean-Luc Neptune (40:16.174)
And I think that having that kind of flow chart, having a kind of pathway is hugely useful. And I think for many patients would eliminate or ameliorate or mitigate some of the anxiety that they have as they go through the treatment for what is many people, the scariest disease that you could ever have.

Samira Daswani (40:23.344)
risk.

Samira Daswani (40:35.824)
I have to say this was not a paid endorsement at all. You just described a product that is probably going to come out when this podcast episode is released. This was not a paid endorsement. Just to be clear for everybody listening, I did not plan this one, but yeah, I can go. And that's literally the foundation of our digital platform. That is precisely the foundation. We consistently say that navigating cancer is like a treacherous hike

Jean-Luc Neptune (40:40.266)
Jean-Luc Neptune (40:52.91)
Thank you.

Jean-Luc Neptune (41:00.91)
Got it.

Samira Daswani (41:04.624)
where you don't get access to a map, relevant gear, or a guide. The map is your crucial part. Gear and guide only mean so much, but if you don't know where the heck you are and where you're going next, like, don't give me the full backpack, what will I do with it? I need to know where I am. The very first thing is like, where am I now? What are the next things I need to do? And what does it look two months from now, three months from now, six months from now? Because we often forget that...

Jean-Luc Neptune (41:08.142)
Mmhmm.

Jean-Luc Neptune (41:16.926)
I'm going to go ahead and close the video.

Yep.

Samira Daswani (41:32.976)
People have lives. We need to plan things. You have jobs, you have kids, you have parents, you have work that needs to be told if you can come to work on a certain day or not. And we forget the practical aspects of life when we enter the healthcare system. Now I'm going to go to rant and I'm going to prevent myself because we're recording. Thank you for lucidating our product. I appreciate it.

Jean-Luc Neptune (41:44.174)
Yeah.

Jean-Luc Neptune (41:53.978)
you

Jean-Luc Neptune (41:58.446)
No, no, I, and again, as you said, not, not intentional in any way, but I think, you know, again, so much of this is the unknown and the uncertainty. And if you can address those issues, I think you can really make a difference for families and for people with diagnosed with cancer.

Samira Daswani (42:13.296)
and it's...

Thank you so much for taking the time. I super appreciate it. I hope that we can like see you once you're in the next chapter of your career and you land on your two feet, which I suspect you will. And I am so grateful that you took the time to talk about your story and teach us what you learned by hacking the system. So thank you.