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What Longitudinal Data Actually Contains, with Shashi Shankar · The Clinical Realist

0:00
SPEAKER_01: So here's a number I want to put in front of you before we even start.
0:03
SPEAKER_01: And there's a caveat here.
0:05
SPEAKER_01: So inside a registry of about 6,000 patients on GLP1 meds, roughly 45% have been on two or more different versions of that drug.
0:14
SPEAKER_01: And most commonly they're moving from semi-glutide to precipitate, you know, and that number is my guess from his own data.
0:21
SPEAKER_01: And the reason it exists is really that somebody stitched those patients' records together across every provider they've ever seen.
0:28
SPEAKER_01: Now the largest published study we have, about 127,000 adults, puts 12 month switching and closer to 20.
0:35
SPEAKER_01: So either the longitudinal record is seeing something claims data doesn't, or the denominators are totally different.
0:41
SPEAKER_01: So both of those are interesting, and we're gonna get to that.
0:44
SPEAKER_01: So my guess is Shashi Shankar, co-founder and chief executive of Novelia, and he spent nearly a decade at Genitech working on real world data before he started a company, built on a simple and uncomfortable premise, and that's that the only person present for the entire history of your care is you, and nobody has ever given you the tools to hold it.
1:02
SPEAKER_01: So Novelia puts your records from every portal you've ever logged into together.
1:08
SPEAKER_01: Interesting.
1:09
SPEAKER_01: So I want to talk about what that record makes visible and about the part that keeps me up at night, which is that the doctor read your prescription still can't see most of it.
1:18
SPEAKER_01: So Shashi, welcome to the clinical realist.
1:21
SPEAKER_02: Thank you so much, Dr.
1:22
SPEAKER_02: Matt.
1:22
SPEAKER_02: And uh what a what a lovely intro.
1:24
SPEAKER_02: I I uh love the GLP 172, so I hope we can get into it later on.
1:27
SPEAKER_01: I know, right?
1:28
SPEAKER_01: It's it's very compelling.
1:29
SPEAKER_01: Well, you know, I'm interested to hear about Novelia, and I know that it's solving a specific data problem in healthcare.
1:35
SPEAKER_01: So help me understand exactly how you would talk about Novelia in plain terms for the listener.
1:43
SPEAKER_02: Yeah, I think I think there are two things I would talk about.
1:46
SPEAKER_02: The first and foremost, which is really the foundation of the company, is that our mission is to help people have a simpler and more efficient healthcare journey.
1:54
SPEAKER_02: And what I mean by that is, as you mentioned, the patient who's at the center of their own healthcare journey today doesn't have access to all their medical data.
2:01
SPEAKER_02: And you can think about how problematic that is for somebody with an acute or a chronic or severe medical condition.
2:06
SPEAKER_02: So the first thing Mabelia does is we provide a free solution where patients can gather and unify all of their medical records from almost 25 years of care across the United States.
2:15
SPEAKER_02: The second thing we do is we use that data to safely, anonymously, and at a de-identified level, help researchers understand how patients actually experience care at the most specific level.
2:27
SPEAKER_02: And that in turn helps us get therapeutics and lifesaving innovations to market a little bit faster for those exact patients.
2:33
SPEAKER_01: So let's talk about the business model out loud.
2:36
SPEAKER_01: So the app is free to patients.
2:39
SPEAKER_01: So who pays and what do they get?
2:41
SPEAKER_02: Yeah, the app is 100% free to patients.
2:43
SPEAKER_02: And the way that we keep the lights on, actually, we see it as two sides of the same coin.
2:48
SPEAKER_02: We think it's a virtuous cycle.
2:49
SPEAKER_02: And at a micro level, we could help patients individually by helping them gather all their medical records.
2:55
SPEAKER_02: At a macro level, by sharing those data with researchers in an anonymized way, those researchers can help those same patients by bringing therapeutics and different innovations to market faster.
3:06
SPEAKER_02: So it's the research organizations that pay to actually work with the data.
3:10
SPEAKER_02: So the only paying customer we have are leading biopharmaceutical companies, but the patients themselves have never and will never pay for the product.
3:17
SPEAKER_02: We believe it should be a basic human right that folks have access to all their medical records.
3:22
SPEAKER_01: Understood.
3:23
SPEAKER_01: So what does the care coordination look like on the ground right now for a patient?
3:28
SPEAKER_01: And where do you see it breaking down?
3:29
SPEAKER_01: I have big opinions, but I'd love to hear yours first.
3:32
SPEAKER_02: Absolutely.
3:32
SPEAKER_02: And I'd love to I'd love to hear your thoughts from the clinician's perspective.
3:35
SPEAKER_02: Care coordination, I think, is a lovely phrase, but it's it's sort of uh, four-letter word.
3:42
SPEAKER_01: Is that what you're saying?
3:43
SPEAKER_01: I think that's what I'm saying.
3:44
SPEAKER_01: I'm totally saying Yeah, totally.
3:46
SPEAKER_02: Okay, then we could we could uh we could just go right into it.
3:49
SPEAKER_02: Yeah, I think it never happens.
3:50
SPEAKER_02: I think people try really hard, but it's not the fault of the stakeholders and the people that are trying their best.
3:55
SPEAKER_02: I mean, everything takes a village, especially healthcare.
3:58
SPEAKER_02: But the challenge is if I'm a woman living with breast cancer or I'm a gentleman living with a rare neurological condition, there's so many people and so many parties involved in my care.
4:08
SPEAKER_02: There's myself, there's most likely my family, there's my insurance company, there's my PCP, there's a specialist, there's a community physician that I'm seeing, there might be urgent care as well that I pop into.
4:18
SPEAKER_02: And so, how can any of those stakeholders collaboratively coordinate care?
4:21
SPEAKER_02: So I think the basic thing that we realize at Novelia is because the first order problem has never been solved, which is the fragmentation of medical records, care coordination, which is sort of a second or third order problem, can't actually happen.
4:33
SPEAKER_02: So if we at Novelia can solve that most basic problem of how do we get all those medical records in the same place, it follows logically that things like care coordination, appointment coordination, medical research, uh care coverage, all of those things can flow sequentially, but you've got to start with the core problem, which is the fragmentation and the disorientation of all of those medical records across the country.
4:54
SPEAKER_01: Now, I see a lot of fragmentation in lots of different places.
4:57
SPEAKER_01: There's the admission piece or new patient, there's the discharge piece or discharge to nothing.
5:03
SPEAKER_01: And I think that those transition pieces can be very difficult.
5:07
SPEAKER_01: Where are you seeing this fragmentation happen the most?
5:10
SPEAKER_02: Where we see the fragmentation happen the most is typically when a patient is typically going from one type of care, meaning a community clinic to a lab center, or a lab center to an academic specialist, or an academic specialist to a testing facility.
5:26
SPEAKER_02: Now, I think that a lot of the folks that have been in this industry for a while, a lot of EHR organizations and interoperability companies have made significant progress in helping to sort of corral data, but they're still walled gardens, and it's very difficult for patients themselves to go fetch all of those walled gardens and make sort of a nice, a nice agricultural field of.
5:47
SPEAKER_02: I think the most common fragmentation is when a patient goes from one set of care to another set of care.
5:53
SPEAKER_02: But increasingly what we're seeing is even within one health system, if you go to the hub, so maybe you go to the center of excellence in an urban area, uh, but you actually receive your care at the community clinic, uh, which happens to be two hours away, that care coordination actually breaks down.
6:09
SPEAKER_02: And the sharing and the transmittance of those medical records many times doesn't happen in a complete way.
6:13
SPEAKER_02: And we can get into sort of like the technology behind interoperability and why there's still a lot lacking.
6:18
SPEAKER_02: But I think that is typically where we see the most common fragmentation starting to occur.
6:22
SPEAKER_01: So when you think about folks that are impacted by fragmented data, the patient is the obvious answer.
6:29
SPEAKER_01: But who around the patient is the most affected?
6:33
SPEAKER_01: So push past the patient.
6:34
SPEAKER_01: Who's now most affected by fragmented data?
6:37
SPEAKER_02: I think the first concentric circle, the unspoken heroes and the unspoken support systems are typically the family and the friends and the loved ones of the patient.
6:48
SPEAKER_02: Um, for example, my grandfather, who inspired the creation of the company, was diagnosed with gastroesophageal cancer.
6:54
SPEAKER_02: And while there is no doubt he was uh the protagonist of the story and he was the one that had to deal with everything, a significant amount of the burden, a significant amount of the work fell on my mom, who is his caregiver.
7:06
SPEAKER_02: And so she would have to be the one that was shepherding him from appointment to appointment and trying to remember well, did we actually get that chest CT done and what were the results and where did I store them?
7:14
SPEAKER_02: And what did we find out the last time he was on chemo or these sort of the take immunotherapy?
7:18
SPEAKER_02: Did it work?
7:19
SPEAKER_02: What went wrong with it?
7:20
SPEAKER_02: So it's usually the fragmentation and the and the burden of medical records being all over the place.
7:24
SPEAKER_02: Of course, the primary person affected is the patient, but there's a significant burden and there's a significant cognitive and emotional load that families themselves carry as well because they're trying their hardest, but they're limited and they're constrained by a system that was never really engineered around the patient.
7:39
SPEAKER_02: It was engineered around insurance companies, health systems, billing, scheduling of appointments, and so on and so forth.
7:45
SPEAKER_01: So when we think about the caregiver, the caregiver's holding a record, whether they've photocopied it, download it, you name it, that no one really gave them and no system actually acknowledges.
7:57
SPEAKER_01: So you're suggesting it costs them time, suffering, you name it.
8:02
SPEAKER_01: But I think it also probably costs not just the caregiver, but the patient, again, the ability to have more financial control, the ability to have that appointment control.
8:11
SPEAKER_01: And so it's not just, oh, a misdiagnosis on a form, it's now we're going to an appointment, but it's actually not an appointment.
8:18
SPEAKER_01: It's not scheduled.
8:19
SPEAKER_01: Or oh, we now have to get this test twice.
8:22
SPEAKER_01: It's all those different pieces there.
8:23
SPEAKER_01: So do you see the cost when you think about that fragmented data?
8:27
SPEAKER_02: Oh, yeah.
8:28
SPEAKER_02: I mean, there is, if you think about the appointment as sort of the nucleus of a patient's care experience, right?
8:33
SPEAKER_02: It's sort of like the where the where the pebble drops and there's ripple effects from the appointment.
8:37
SPEAKER_02: There are the medications you take, the tests you get, the clinical insights and the conclusions that are drawn, the people you get referred to.
8:42
SPEAKER_02: So if every appointment is sort of a fresh nucleus and there's so many ripple effects and tremor effects that come from it, if you think about the financial impact of not having a complete medical history when uh Dr.
8:54
SPEAKER_02: Smith sees Sarah, right?
8:55
SPEAKER_02: If Dr.
8:56
SPEAKER_02: Smith doesn't know the totality of Sarah's care, he's forced, not because of his own mistakes, but he's forced to draw in complete insights.
9:03
SPEAKER_02: And what that does is Sarah might get placed in a modality of care that's not the most efficacious for her, which means her insurance company obviously is spending lots of money that could go towards a more effective form of care.
9:13
SPEAKER_02: Maybe Sarah is missing work, so she's also missing income.
9:16
SPEAKER_02: Maybe she's less productive in her daily life, so there are things she's constrained by.
9:20
SPEAKER_02: But also from a macroeconomic level, the American ecosystem and the American economy misses out on a significant portion of money because there's a lot of money being invested into Sarah's care, but she's also potentially not able to work.
9:33
SPEAKER_02: She's potentially not able to contribute to society.
9:35
SPEAKER_02: So everybody from the individual protagonist of Sarah, as sort of like the key character of her healthcare story, all the way out to people that she might not consider like the American government totale, uh, could be very difficult for us to sort of um understand the cost impact of.
9:52
SPEAKER_01: Well, I'm all about main character energy, so I'm gonna go with that one.
9:55
SPEAKER_01: So let's talk about me.
9:57
SPEAKER_01: So say I have several chronic conditions, I have a crud ton of kids, so it's all a mess.
10:04
SPEAKER_01: Maybe I've lived in several states.
10:06
SPEAKER_01: I decide I'm gonna check out Novellia.
10:09
SPEAKER_01: So tell me what it's like on day one, and then tell me what it's like on day 90.
10:13
SPEAKER_02: Yeah.
10:14
SPEAKER_02: On day one, it should be hopefully, or I'll talk to our product team, but it's it should hopefully be a very seamless process.
10:20
SPEAKER_01: Um, I'm just gonna go through a workflow one and be like, dear Shashi, I want to tell you something.
10:27
SPEAKER_02: Well, we we have a great, great user support team.
10:29
SPEAKER_02: So any feedback you have, you know, it's so funny.
10:31
SPEAKER_02: A side note is my dad was our first ever uh beta user.
10:34
unknown: Okay.
10:35
SPEAKER_02: And you know, I think we're my parents, my parents are Indian immigrants, and so they can't help the pride, unsolicited, very direct feedback.
10:41
SPEAKER_02: And so he he started the he joined the product for the first time, and um we didn't even have user support.
10:46
SPEAKER_02: And I mean his text messages are like five paragraphs.
10:49
SPEAKER_02: So we've we've come a long way, I think, since the first time my dad tested out the product.
10:53
SPEAKER_02: But any feedback, uh, we we always welcome jokes aside.
10:56
SPEAKER_02: But um, okay, so the way it works.
10:58
SPEAKER_02: So Sarah would go to Novellia.com and she would click sign up, she would enter her email, uh, she would log in, and she would click one box.
11:05
SPEAKER_02: And the one box is a consent, and we always try to be as transparent as possible.
11:08
SPEAKER_02: So the consent allows us to do two things.
11:11
SPEAKER_02: One, it authorizes us to go actually get your medical records and to unify all of them, which is critical, right?
11:16
SPEAKER_02: You authorize us to go get your medical records.
11:18
SPEAKER_02: And the second part is you consent to us working with researchers to advance healthcare.
11:23
SPEAKER_02: Now, I think a lot of data companies shy away from that, right?
11:27
SPEAKER_02: They typically don't talk about the fact that they work with biopharmaceutical companies.
11:30
SPEAKER_02: We don't shy away from it.
11:31
SPEAKER_02: I think it's on our website, it's in every press release, it's in everything we talk about because we actually believe it's a virtuous cycle that the researchers we work with actually come back to help the patients that we serve.
11:41
SPEAKER_02: So Sarah signs that one checkbox, that consent box, and then she's into the system.
11:46
SPEAKER_02: Then the system walks you through a very simple onboarding flow where it helps you find the healthcare systems where you've received care and you log into them using your patient portal login.
11:54
SPEAKER_02: Now, the biggest question folks might have is well, who in the world remembers their patient portal login?
11:59
SPEAKER_02: That was a huge contrarian between met.
12:01
SPEAKER_02: You don't, okay.
12:02
SPEAKER_02: So if you think about it this way, uh, this is a conversation we had to have all the time in the earliest rounds of our fundraising, and sometimes we still do.
12:08
SPEAKER_02: But the way we think about it, and this is an insight I had at Genentech, is if you imagine the American healthcare system as this perfect bell curve, on this side of the bell curve, you have extraordinarily healthy folks that are into longevity and peptides and biohacking, and they have all of the crazy gadgets you can think of, but they're generally healthy folks.
12:25
SPEAKER_02: Those folks don't necessarily generate data that would be very informative or valuable for medical innovation, right?
12:31
SPEAKER_02: They're typically like the healthy, quite wealthy, quite well off folks that are just very interested in their own biology.
12:37
SPEAKER_02: The middle bucket, which you could place at maybe 70, 75% of America's population, they're folks that if I walked over to Prospect Park right now, you'd find a lot of them.
12:46
SPEAKER_02: And those are folks that are generally healthy, they're okay.
12:48
SPEAKER_02: They might get a physical once every few years, they probably don't log into their patient portal, and they might progress into becoming very health and wellness focused or into having a severe acute condition.
12:58
SPEAKER_02: But right now, they're sort of baseline.
13:01
SPEAKER_01: Just trying to survive over here.
13:03
SPEAKER_01: That's what we're trying to do.
13:04
SPEAKER_02: They're just they're just trying to make it through.
13:07
SPEAKER_02: And so those folks also are not generating hordes of information that researchers would find very valuable for their purposes, right?
13:14
SPEAKER_02: It's not that it's not valuable, but it's not valuable for biomedical research today.
13:18
SPEAKER_02: This part of the bell curve is the only part of the bell curve that Nevalue focuses on today.
13:21
SPEAKER_02: And this part of the bell curve, which you could put at about 15 to 20% of the population, unfortunately, those are folks with very serious, complex, and severe medical conditions.
13:30
SPEAKER_02: It could be acute, it could be chronic, but they're dealing with the very complicated healthcare journey.
13:34
SPEAKER_02: Those are the folks that have been, in my view, left behind by the healthcare system.
13:39
SPEAKER_02: Insurance companies, healthcare systems, everybody has sort of built for all of the other parts of the population except for these folks.
13:44
SPEAKER_02: And those folks are generating enormous amounts of clinical data, sometimes 10 to 20 times the magnitude of everybody else on that bell curve.
13:52
SPEAKER_02: And that data is extraordinarily valuable at a de-identified anonymized level to helping researchers understand what those patients need next.
14:00
SPEAKER_02: And those are the only folks you work with.
14:01
SPEAKER_02: Now, those folks are hyper-engaged in their healthcare, right?
14:05
SPEAKER_02: So typically sometimes you're seeing three to five physicians a year.
14:07
SPEAKER_02: They're trying their best to corral their data.
14:09
SPEAKER_02: A lot of the folks we talked to have physical binders of all of their printouts.
14:13
SPEAKER_02: And so those folks, if you say, hey, I have a tool, it's 100%, and it'll help you with the most basic frustration you have, which is where the heck are all my medical records.
14:22
SPEAKER_02: You don't have to start from scratch every time you see a new physician.
14:24
SPEAKER_02: There's a beautiful AI summary that helps you understand what's going on with your care.
14:28
SPEAKER_02: There's a symptom tracker, there's medication adherence, there's a whole host of things there.
14:31
SPEAKER_02: It's 100% free, and we get to help researchers build for patients like you.
14:36
SPEAKER_02: Those folks typically know where their medical records sit.
14:38
SPEAKER_02: They just can't get all of them together.
14:40
SPEAKER_02: And so that's the solution that we have.
14:41
SPEAKER_02: But hopefully that gives a little context on logging into patient portals might seem a little uh daunting or unfamiliar to a huge part of the population, but the part of the population that we built the company around and for typically is very engaged in that exact muscle memory motion, if that makes sense.
14:57
SPEAKER_01: It does.
14:58
SPEAKER_01: So, you know, there's lots of organizations touting longitudinal health records all over the place.
15:03
SPEAKER_01: And so I'm sure you deal with fundraising every day in the same specific space.
15:09
SPEAKER_01: How is no value different?
15:12
SPEAKER_01: Why is it going to work better than the Microsoft, you know, patient keeper or all the other things that have come before it?
15:19
SPEAKER_01: Tell me more.
15:20
SPEAKER_02: So I think uh I think the most common there are almost two methods.
15:26
SPEAKER_02: This is like a grossly oversimplified way to talk about it.
15:28
SPEAKER_02: It's very reductive, but I think there are basically two ways that companies can try to create longitudinal data, true longitudinal data.
15:35
SPEAKER_02: The first is uh you genuinely believe patients are the primary and the only source of clinical data.
15:42
SPEAKER_02: Now, if you believe that, which is what Nivelli believes, uh the only way you gather data is to gain the trust of patients.
15:48
SPEAKER_02: It's hard.
15:49
SPEAKER_02: It's really, really hard.
15:50
SPEAKER_02: And I think a lot of larger companies think that they can buy their way into trust or that they can license out data.
15:56
SPEAKER_02: And so it's hard for them to do, right?
15:58
SPEAKER_02: And so if you don't view patients.
16:03
SPEAKER_01: But it's really hard to put trust on a PL.
16:05
SPEAKER_01: That's a hard one, right?
16:06
SPEAKER_02: It's impossible.
16:07
SPEAKER_02: It's impossible.
16:09
SPEAKER_02: Trust takes forever to build and a second to lose.
16:11
SPEAKER_02: And I think it's really, really, really difficult.
16:13
SPEAKER_02: And a lot of companies, you know, are I think are used to being able to buy their way into things, uh, but you can't do that with trust.
16:19
SPEAKER_02: And so the first bucket are companies that view patients as you know the author of their healthcare journey that they deserve to have support.
16:26
SPEAKER_02: And you can work with them to generate very, very powerful, rich, compelling clinical data.
16:31
SPEAKER_02: And so that's really tough to do.
16:33
SPEAKER_02: And if you do that though, if you actually create a solution like Novelli has done, where you know you provide something free that's very valuable for patients, and because of that, patients are able to compile an enormously valuable longitudinal story.
16:44
SPEAKER_02: In my view, that's the cleanest, most accurate, most comprehensive data.
16:48
SPEAKER_02: Because the patient themselves, as you said in your intro, the patient is the only one that's lived through every single touch point.
16:54
SPEAKER_02: And so if you empower the pos the patient to actually gather all that data, theoretically, conceptually, you should be capturing most of it.
17:01
SPEAKER_02: And you can help supplement it with technology.
17:03
SPEAKER_02: Yeah, that's bucket one.
17:04
SPEAKER_02: Unfortunately, it's not uh a very crowded, well, maybe fortunately for us, it's not very crowded.
17:09
SPEAKER_02: Um, but that means uh because not a lot of work has been done there except for companies like Navalia, it seems almost impossible to believe, right?
17:16
SPEAKER_02: How could you possibly do this?
17:17
SPEAKER_02: How could you convince patients to want to share their data?
17:19
SPEAKER_02: Do patient portals even work?
17:21
SPEAKER_02: So on and so forth.
17:22
SPEAKER_02: Bucket two, which is hyper crowded, is the notion of longitudinality.
17:27
SPEAKER_02: And the way you get to the notion, in my mind, of longitudinality, and this is not to disrespect companies that do this, is you have a bunch of shortcuts.
17:34
SPEAKER_02: And the shortcuts are, you know, if I have five million bucks and I don't particularly care about working with patients, I can call one of probably 10 companies and I will leave them nameless, but everyone knows who these companies are.
17:44
SPEAKER_02: And you write a big enough check and the companies cut you a chunk of patient data and the patients don't even know that you have their data, right?
17:50
SPEAKER_02: That's how it works.
17:51
SPEAKER_00: I'm sure we signed all those agreements ourselves the last time I went to the doctor's office.
17:55
SPEAKER_02: Yeah, yeah.
17:56
SPEAKER_02: And we you probably did, and the health systems themselves, right?
17:59
SPEAKER_02: It's it's a gold mine for health systems.
18:01
SPEAKER_02: And so those health systems will license out their data to intermediaries, and those intermediaries will sell your data to some other data company, right?
18:08
SPEAKER_02: So if I'm a data company and I'm in bucket two, I don't really care about working with patients.
18:11
SPEAKER_02: I'm here to make a buck and I just want to arbitrage clinical data.
18:14
SPEAKER_02: I spend a few million bucks, I go buy tons of data from every clearinghouse and every sketchy broker intermediary that I can.
18:20
SPEAKER_01: And then I do this.
18:24
unknown: Yeah.
18:24
SPEAKER_02: I only went slightly sketchy, I only went slightly sketchy.
18:27
SPEAKER_02: And so they go and they patch all of this data.
18:29
SPEAKER_02: And again, the patients have no idea that their most sacred sensitive data is now in the hands of some unknown data company, right?
18:37
SPEAKER_02: So this data company now has slices of data from five different companies.
18:40
SPEAKER_02: But now they have a problem.
18:41
SPEAKER_02: How do they stitch it all together?
18:42
SPEAKER_02: So then they go pay and they tokenize it.
18:45
SPEAKER_02: And the way I'm sure you're super familiar with this, but if folks aren't, the way tokenization works is it's actually very interesting.
18:51
SPEAKER_02: It's it's designed to stitch together data that patients have never consented to stitching together.
18:56
SPEAKER_02: And the way they do that is different data sets get assigned a token, and these tokenization companies try to find token matches and then pull all the data together.
19:03
SPEAKER_02: Again, grossly oversimplified.
19:05
SPEAKER_02: But the problem with that, if you imagine, imagine I have five data sets.
19:08
SPEAKER_02: Every time I try to find an overlap between data set one and two, 20% hit rate.
19:12
SPEAKER_02: Okay, so 20% hit rate in my first combination.
19:14
SPEAKER_02: Then I try to combine that data set with data set number three.
19:17
SPEAKER_02: Again, maybe a 15 to 20% hit.
19:19
SPEAKER_02: So at the end of the day, how many complete patient stories do I have?
19:24
SPEAKER_02: A fraction of a fraction of a fraction of a fraction.
19:26
SPEAKER_02: And then again, it's not live.
19:28
SPEAKER_02: So it's it's frozen in time.
19:30
SPEAKER_02: It's a snapshot.
19:31
SPEAKER_02: The moment that patient goes to see a different physician, it's not longitudinal anymore.
19:34
SPEAKER_02: So that's why I say it's the notion.
19:36
SPEAKER_02: Bucket two is the is the theory or the branding of longitudinal data.
19:40
SPEAKER_02: But if you ever pick up the phone and call an evidence generation executive or somebody in health economics at a pharma company, go, have you ever seen real longitudinal data?
19:47
SPEAKER_02: They'll say no.
19:48
SPEAKER_02: It's it's like complete BS.
19:49
SPEAKER_02: It doesn't exist.
19:50
SPEAKER_02: So it's really, really tough.
19:51
SPEAKER_02: So and that's part of why I started, because I thought, you know, these a lot of these companies are are uh stitching together data without patient consent.
19:59
SPEAKER_02: And it's really poor quality data, and it's not actually helping patients out.
20:03
SPEAKER_02: And so yeah, a bit of a long-winded answer.
20:04
SPEAKER_02: I you can tell I'm on a soapbox, but yeah, it's a passionate topic.
20:08
SPEAKER_01: Well, here's one of the things I always worry about.
20:10
SPEAKER_01: If my patient has all their information, that's wonderful.
20:14
SPEAKER_01: But how do we get all that information back to the provider to make better care decisions?
20:19
SPEAKER_02: Yeah.
20:20
SPEAKER_01: It's not solved yet.
20:21
SPEAKER_01: And that's the thing.
20:22
SPEAKER_01: Maybe it's not solved yet.
20:24
SPEAKER_02: I think it I I don't think it's, I definitely don't think it's solved yet.
20:27
SPEAKER_02: I think that there are a lot of very innovative companies that are trying to trying to get there.
20:31
SPEAKER_02: One of the things that we've been working on that should be launching soon is uh a feature called Share UX, where a patient can safely and securely, at their own discretion, share their complete medical record for Novalia with physicians, with family, with growth care partners as well.
20:45
SPEAKER_02: So I think that that is something that we endeavor to do, but our first priority, we really built it around two lenses.
20:52
SPEAKER_02: One was the patient and the other was research.
20:54
SPEAKER_02: Uh and I think a lot of other organizations are focused more on the clinical side of it too.
20:57
SPEAKER_02: But of course, I mean, I can imagine as a clinician why you would want the totality of that medical record to be able to help the patient out as well.
21:04
SPEAKER_02: It's it's critical to make informed decisions and recommendations, there's no question.
21:08
SPEAKER_01: So, what do you think about patient-owned health data in three years?
21:13
SPEAKER_01: So today, I can barely think about the tech side of things in a month or six months, but we think about patient data in three years.
21:22
SPEAKER_01: What makes you confident in that direction over other beds on the table?
21:26
SPEAKER_01: What makes you hopeful?
21:28
SPEAKER_02: The first thing that makes me hopeful is patients are finally aware that they can reclaim ownership of their healthcare journey.
21:38
SPEAKER_02: I I think what we see, we just finished a huge round of user interviews, and what we see in the communities that we work with, it's sort of this renewed or reawakened hope and feeling of agency, which is oh, I didn't realize I could go gather all my medical records.
21:54
SPEAKER_02: I didn't realize that I could start to understand it on my own.
21:57
SPEAKER_02: And I think there's a lot of good and bad with AI, but the Way that we apply it with the Novelia is to simplify and clearly articulate the impact and what's happening to a patient's healthcare journey to them.
22:08
SPEAKER_02: So I think there are a couple of wonderful tailwinds.
22:11
SPEAKER_02: One is patient agency, I think, is on the upswing, and I'm curious what you see on your side of the table as well.
22:16
SPEAKER_02: But I think that there's a lot of renewed ownership and a lot of interest in patients reclaiming their health, engaging more, gathering their medical records, understanding what to do, participating, sharing in the decision making with their clinicians.
22:28
SPEAKER_02: And I think that's an incredibly, maybe the most important tailwind.
22:31
SPEAKER_02: The second tailwind is interoperability.
22:33
SPEAKER_02: So the ability to technically access all of that data continues to get better.
22:37
SPEAKER_02: Literally every hour of every day continues to get better.
22:39
SPEAKER_02: And so in three years, you can imagine the work that takes us an enormous amount of effort, maybe has been, it's maybe it's reached a stage of uh near completion, where there's access to not just every lab, every healthcare facility, every insurance company, genomics databases, different multi-omic sets.
22:58
SPEAKER_02: I think I mentioned insurance, but wearables, so on and so forth.
23:01
SPEAKER_02: So you can actually have multi-omic interoperability, uh, which means it's not just clinical data, which is our sweet spot at Nivelia, but it's truly multimodal data that interoperability lets companies like Nivellia gather for patients.
23:14
SPEAKER_02: So first tailwind is the patient agency, second tailwind is the technical interoperability, the capacity to go get all that data.
23:21
SPEAKER_02: And the third, again, I know that AI is very, especially the past couple days, very controversial, but I think the third tailwind is the application of responsible AI to help make sense of all that data.
23:32
SPEAKER_02: And what we have done at Novelia, again, we're in the early innings, is you can imagine at Novelia, let's say Sarah joins the platform, and in 30 seconds we have five different data sets, right?
23:41
SPEAKER_02: Let's say we're able to pull in data from five different positions that you've seen over the past two years.
23:46
SPEAKER_02: The challenge with that is if you've ever seen like raw XML files or raw images, it's so hard to understand all of that.
23:53
SPEAKER_02: And what we have done at Novelia is spent a lot of time with our data science team making it really simple and accurate to take those five sources, to reconcile them, to normalize them, and say, this is what's happening with SARS healthcare.
24:05
SPEAKER_02: Now you can imagine that scaled and really hyper-powered in two to three years to almost be a predictive engine to actually help guide patients along their healthcare journey.
24:14
SPEAKER_02: So I think the opportunity for AI is enormous with helping patients understand and navigate their journey.
24:20
SPEAKER_02: And we haven't even talked about the commercial side of the business, which is working with biopharma researchers.
24:24
SPEAKER_02: I know your question was about the patient perspective, but I think that is where I would say in three years, the patient agency, the interoperability, and then sort of the impact of where responsible AI can go over the next couple of years.
24:34
SPEAKER_01: Yeah, I think no one can dispute the fact that real patient data that's really longitudinal will absolutely help research move forward faster.
24:41
SPEAKER_01: Absolutely.
24:42
SPEAKER_01: I think for me, you know, the trust barriers of giving your data is tough.
24:47
SPEAKER_01: You know, in other countries, every citizen's data is just there for the Ministry of Health to do it as they see fit for the population.
24:55
SPEAKER_01: And there's benefits, but there's also non-benefits to that too.
24:58
SPEAKER_01: Here in the United States, everyone's got opinions on who they want to have information and who they don't.
25:04
SPEAKER_01: Yes, Google Maps knows everywhere I am all the time.
25:08
SPEAKER_01: And I'm happy to give that data because I feel like I get value for it.
25:13
SPEAKER_01: Now, in your interactions with your alpha and beta customers, your patients, what do they feel like they're getting that's valuable?
25:22
SPEAKER_01: I know you're saying that the logitudinal record to them feels like they have agency and it feels valuable.
25:27
SPEAKER_01: Is that enough for them?
25:30
SPEAKER_02: Long-term agency and ownership, I think covers more and more surface area.
25:36
SPEAKER_02: I think the only thing that matters is if a user's life, for any product, right, for any product, if a user's life is a little bit better than it was before they used the product.
25:45
SPEAKER_02: But that little bit starts to encompass more and more and more and more surface area because what feels like a good delta today is de minimis in like, honestly, at this rate, two months from now.
25:55
SPEAKER_00: In a minute, in a minute.
25:56
SPEAKER_02: In a minute, right?
25:57
SPEAKER_02: In a minute.
25:57
SPEAKER_02: And so I think for us, the very first thing that we solved was giving folks peace of mind that I mean, my goodness, at least I have all my medical records, right?
26:05
SPEAKER_02: I don't have to go search.
26:06
SPEAKER_02: I don't have to try to remember.
26:07
SPEAKER_02: And I it's hard to explain to folks that have been blessed with good health what that means, right?
26:13
SPEAKER_02: But but if you're not blessed with good health, if you're navigating a very serious life or death healthcare situation, the last thing you want to do is think about wait a second, did I ever did I ever get that booster?
26:22
SPEAKER_02: Did I get that vaccine?
26:23
SPEAKER_02: What was that drug I was on two years ago?
26:25
SPEAKER_02: Did it go well?
26:25
SPEAKER_02: What did my physician say?
26:27
SPEAKER_02: Um and so it's and what was the sequence, especially for oncology, what was the sequence?
26:31
SPEAKER_02: What were the lines of therapy I was on?
26:33
SPEAKER_02: And if you can't remember that or if you can't gather that data, it is so difficult and it's so problematic.
26:38
SPEAKER_02: So I think the very first thing that we've done is to give that agency and that knowledge back to patients.
26:43
SPEAKER_02: But we recognize the work begins or doesn't end there.
26:45
SPEAKER_02: And so I think as I mentioned earlier, the number of different tools we have layered on top, again, totally for free, symptom tracking has evolved into a really valuable feature for us.
26:54
SPEAKER_02: There's also medication reminders.
26:55
SPEAKER_02: And the medication reminder, the reason it's beautiful, is the moment Sarah joins, our systems safely can identify what therapeutics you're on, the dosage, the time of day, and then recommend medication reminders that can go straight to your phone.
27:09
SPEAKER_02: They can be sent to you within the app as well.
27:11
SPEAKER_02: There's so many things.
27:12
SPEAKER_02: And there's trends and patterns that we can detect about your healthcare that we can share with you.
27:16
SPEAKER_02: We can summarize physician visits, we can summarize your trends across symptoms.
27:20
SPEAKER_02: And over time, I think that that becomes so valuable to actually help patients manage and navigate their healthcare journey.
27:26
SPEAKER_02: But I recognize in two years, the bar for what we have to deliver to patients is going to be almost unrecognizably high, which is why a huge part of our investment with our venture funding, thank you to our investors, but a huge part of it is on the RD side to bring on the best in class engineers and best in class data scientists.
27:42
SPEAKER_01: Nice.
27:43
SPEAKER_01: Well, one thing you wish every patient, physician, or research scientist understood before relying on fragmented data.
27:50
SPEAKER_01: What's that one thing?
27:53
SPEAKER_02: It's solvable.
27:54
SPEAKER_02: It's solvable.
27:55
SPEAKER_02: You don't have to rely on it.
27:56
SPEAKER_02: You know, it's like um my one of my one of my friends, one of my friends hates, doesn't, doesn't like taking Advil or Tylenol at all, right?
28:03
SPEAKER_02: And he will suffer through these terrible headaches.
28:06
SPEAKER_02: Suffer.
28:06
SPEAKER_02: He can't work, he can't participate, he can't be social, anything.
28:09
SPEAKER_02: Um and I'm not saying you should always take an Advil or whatever, right?
28:12
SPEAKER_02: But but it is sort of like it's you know, you know, it was solved a long time ago.
28:17
SPEAKER_02: And so my view is when when, especially when we talk to prospective partners, and uh I wish we had time, but they they'll bring up and complain about the lack of complete data.
28:26
SPEAKER_02: We will pull up a sample patient journey.
28:29
SPEAKER_02: And now, you know, there's such a significant amount of data on our platform that there's virtually no therapeutic area that we can't pull insights on.
28:36
SPEAKER_02: But we'll say, hey, we're gonna do something really quickly.
28:38
SPEAKER_02: We're gonna show you before and after.
28:40
SPEAKER_02: This is a patient journey, right?
28:41
SPEAKER_02: Before DeVelli existed.
28:42
SPEAKER_02: And it's based maybe on claims data, or maybe it's based on the model that a data broker would use to stitch together data.
28:48
SPEAKER_02: And you're gonna see maybe a couple years of data, but you're gonna see massive blind spots.
28:52
SPEAKER_02: And then is this what your data look like today?
28:54
SPEAKER_02: And I know the answer is yes because I used to do it for a living.
28:57
SPEAKER_02: And they'll say, Yeah, it's really frustrating.
28:58
SPEAKER_02: And we spent X million bucks on that data set.
29:01
SPEAKER_02: And then we'll press a little toggle and it'll pull up the entire Navalia data set, which has incredibly rich data and it's full and it's comprehensive, and it's live and it's constantly updating.
29:09
SPEAKER_02: And we'll say, Did you know that this exists?
29:11
SPEAKER_02: Right?
29:12
SPEAKER_02: This is fully solvable and there's a solution here.
29:14
SPEAKER_02: So my answer is it's solvable.
29:16
SPEAKER_02: And for folks that are frustrated by it, I hear, I hear your pain.
29:20
SPEAKER_02: Um, whether you're on the side of the patient or a care partner or a researcher, it's being solved.
29:26
SPEAKER_02: And I and not just by us.
29:27
SPEAKER_02: Like there are a lot of brilliant folks working hand in hand on this too.
29:30
SPEAKER_02: And it again takes a village to get this done.
29:31
SPEAKER_02: But I would say my main message is it's solved, it's being solved, and it'll continue to get better.
29:36
SPEAKER_01: I love that.
29:37
SPEAKER_01: Well, at the end of every show, I have two questions for every guest.
29:41
SPEAKER_01: And they're the same every time.
29:42
SPEAKER_01: So the first one is this What is the clinical or operational reality that most people in health tech get completely wrong?
29:50
SPEAKER_02: Wow, I have to pick just one.
29:52
SPEAKER_01: Gotta start someplace.
29:54
SPEAKER_02: Yeah.
29:55
SPEAKER_02: A lot of people, this is it's terrible, but it's true.
29:58
SPEAKER_02: A lot of people seem to think that it's about revenue cycle management.
30:02
SPEAKER_02: Uh, think about like, you know, you know, ambient scribes, for example.
30:05
SPEAKER_02: Well, what's the what's the hidden value of an ambient scribe?
30:08
SPEAKER_02: It's because it captures so much more and it enables much more accurate and automated billing.
30:14
SPEAKER_02: Um, a lot of patient portals.
30:15
SPEAKER_02: Why do patient portals really exist?
30:17
SPEAKER_02: Right?
30:18
SPEAKER_02: A lot of it's for billing and scheduling purposes and refilling of medication.
30:22
SPEAKER_02: Um your patient on uh your insurance portal, right?
30:25
SPEAKER_02: What is it really for?
30:26
SPEAKER_02: It's to manage your payments.
30:28
SPEAKER_02: And so I think all of these different stakeholders, clinically and operationally, a lot of it comes down, and I get it, a lot of these are businesses, I totally understand, but the businesses have forgotten that they don't have a business without the patient at the core.
30:40
SPEAKER_02: And so I think unfortunately a lot of the work is around like RCM, billing, uh, and I think that unfortunately corrupts and uh sort of uh uh ruins the experience of the patient at the heart of it all.
30:53
SPEAKER_01: Uh having built portals myself, having gone through all of those pieces with all the regulations, yes, it probably does ruin the patient experience.
31:01
SPEAKER_01: I will admit to that.
31:03
SPEAKER_02: Yeah, hopefully not for long, though.
31:04
SPEAKER_02: Hopefully not for long.
31:05
SPEAKER_01: Exactly.
31:05
SPEAKER_01: And then the last question is when's the last time you changed your mind about something in this industry?
31:10
SPEAKER_02: Man, wow, all the time.
31:13
SPEAKER_02: It's weird.
31:13
SPEAKER_02: You you alternate, I think, as a founder between being delusionally optimistic and oh, of course, of course we'll figure it out, of course it's gonna work.
31:19
SPEAKER_02: And then there are moments where you get so cynical, so, so, so cynical about the state of where things are.
31:24
SPEAKER_02: And it's good, but you know, it motivates you to want to build faster.
31:26
SPEAKER_02: So last time I changed my mind about something was without getting into specifics, there's a large healthcare organization that we wanted to work with.
31:36
SPEAKER_02: And my concern was that there was gonna be a lot of red tape uh because there might be very bureaucratic, a lot of rules to follow.
31:42
SPEAKER_02: But I was shocked.
31:44
SPEAKER_02: 10 minutes into the first phone call, it was clear, it was clear that the right path for the patient was very evident.
31:50
SPEAKER_02: And I was amazed at the speed uh and the clarity with which this massive health organization said, no, actually that makes total sense and we get it.
31:57
SPEAKER_02: We actually see it the same way, and we'll figure it out.
32:00
SPEAKER_02: And it moved very quickly.
32:01
SPEAKER_02: So there are these like beautiful moments of serendipity where uh you know you're surprised by how mission-centric some of these companies are.
32:08
SPEAKER_02: They still exist, which I which I think is great.
32:11
SPEAKER_02: Yeah.
32:12
SPEAKER_01: Well, Joshi, thank you so much.
32:14
SPEAKER_01: I think this discussion on longitudinal record has come from very interesting angles that maybe not everyone's heard about.
32:21
SPEAKER_01: But before we go, tell people where to find Novelia and where to find you.
32:25
SPEAKER_02: Yeah, absolutely.
32:26
SPEAKER_02: Novella is far more important than me.
32:28
SPEAKER_02: So I would say prioritize your efforts on finding Novelia.
32:31
SPEAKER_02: But it is uh N-O-V-E-L-L-I-A.com.
32:34
SPEAKER_02: So it's Novella.com.
32:35
SPEAKER_02: And to find me, just Google my name.
32:37
SPEAKER_02: I think, I think uh if you type in my name and Novelia, you'll probably find my LinkedIn or part of our website where you can get in touch with me.
32:44
SPEAKER_02: If you ever want to email me, it's just my first name at Novella.com and I give it out to everybody.
32:48
SPEAKER_02: So uh feel free to shoot me a note and I hope to hear from folks.
32:51
SPEAKER_01: Great.
32:52
SPEAKER_01: So for everyone listening, if you're a patient, the record of your own care exists, about nine billion different places, and none of them talk to each other.
32:58
SPEAKER_01: So go check out Novelia and see what they're building.
33:01
SPEAKER_01: And if you want to subscribe to the clinical realist, you can get it wherever you get your podcasts.
33:04
SPEAKER_01: If you're working through a live data or clinical AI question inside your own organization, a real one and not a theoretical one, the link to both a discovery clearing sessions and show.
33:12
SPEAKER_01: So I'm Dr.
33:13
SPEAKER_01: Sarah Matt, and this is the clinical realist.
33:15
SPEAKER_01: We'll see you next time.