What will patients do if they have their aggregated medical record? Perhaps move faster enough to save a life. Ardy Arianpour of Seqster talks about his passion to empower patients with their medical data. Hope you enjoy.
Bill Russell: 00:04 welcome to this week and health it events where we if great ideas with interviews from the floor. My name is bill Russell. Recovering healthcare CIO and creator of this week in health It, a set of podcast and videos dedicated to developing the next generation of health leaders. We want to thank our founding channel sponsors who have made this content possible health lyrics and VMware. If you want to be a part of our mission to develop health leaders, go to our homepage this week health.com and click on sponsorship information this week we’re at the health conference in Las Vegas and we have a bunch of interviews lined up for you. Here’s a discussion with Ardy Arianpour, the CEO of Seqster and exciting patient centric data aggregation platform. I hope you enjoy
Bill Russell: 00:43 first interview from the health conference health 2019. I’m with Ardy Arianpour, is that correct? That’s correct. Fantastic. With Seqster and I’m really excited for this conversation. I have, I’ve had a lot of, uh, this is an interesting conference because I actually signed up as media as a former CIO. I don’t often, there’s like one of the few conferences I’ve signed up for as media and I got reached out by like a hundred different companies. But your company I actually reached out to because I love what you guys are doing. So give us a little idea of what Seqster is and what you guys are really trying to accomplish.
Ardy Arianpour: 01:14 Sure. First of all, thanks so much for reaching out. Um, we’re flattered to be on your show, number one. Number two, it’s great to be in Vegas and this is our first interview to today, so it’s exciting. Um, we put the person at the center of healthcare and disrupting all their episodic EHR data and adding their continuous monitoring and wearable data as well as bringing together all of their DNA and baseline genetic data all in one place. Essentially creating the mint.com of your health data and allowing you to share that longitudinal health data on your terms.
Bill Russell: 01:53 Yeah, which is great. And no industry. I mean, mint is a great example because no industry other than, I mean healthcare could use it so much because you’re not just talking about a health system data. You’re also talking about genomic data. So I’ve had my genome sequence down in San Diego by the company and I could pull that into your platform. You’re also talking about my
Ardy Arianpour: 02:14 are wearable data Garmins Apple watches, you know, even an old Jawbone that’s in the drawer. We can bring all that data together cause all that data is being siloed on either the device or in the lab or in the institution as you knew being a CIO and the health, you know, systems industry.
Bill Russell: 02:33 Yeah. Well let’s start with interoperability. Yes. Okay. So, um, a lot of my listeners are health systems and they’re sitting there going, okay, how are you doing this? I mean, because you have how many different EHRs and then beyond the EHRS you haven’t meet different PACS systems and what not happened. So
Ardy Arianpour: 02:48 yeah, so it was a complete accident and I really mean that. We didn’t know what interoperability was. We couldn’t even pronounce the word interoperability. It’s not just a $30 billion plus annual ballooning problem for our fragmented us health care system, but more importantly, the word is hard to pronounce. And so about two and a half years ago we had an ex Epic executive come into our offices and say, you guys crack the code on consumer interoperability. And then we figured out that, Oh my gosh, we really do have something beyond mint.com we actually have a business model that we uh, modeled around the sales force.com for healthcare because we had to start with the patients first. It’s all patient directed. So whether it’s you or your loved ones that gets to collect all their longitudinal data no matter what the data sources are. How we did it is we started, you know, early on in San Diego and we started with just a couple of health systems in San Diego and then we grew out in California and then now we have 3,602 hospitals integrated into Seqster.
Ardy Arianpour: 03:59 And how we’ve done that is by standardizing and harmonizing all the Epic, Cerner, Allscripts, McKesson, Athena health, you name it on the EHR side, you know, the top 12 I guess you could say EHR vendors eClinical works as well and lots of others, which is really hard, right? We never want to do it again. And we came from DNA sequencing backgrounds. I was actually one of the first people that have my genome sequenced back in 2009 and we would look at data from the genomic side as ATC gene. It doesn’t matter what lab it comes from, but when we started looking at the EHR data bill, it was so messy that if we knew it was that messy, we would have never done Seqster. And we believe everyone is seeking health data. It doesn’t matter if you’re a payer or provider or a pharma company or a parents.
Bill Russell: 04:47 So there’s a, there’s a handful of things. So the first thing, um, people are always asking you is what’s the value of it? Right? And so I’ve talked about on the show before, I’ve talked about the value of, of having that data, uh, be present wherever you go. Right? So wherever I go, I can hand that to the physician, but if it goes beyond that, right. So I can, I can like donate my data to research. I can then pass my data along, like in my will. I mean I, my data could live on and, and provide value. So talk about some of the use cases.
Ardy Arianpour: 05:19 Yeah. Um, there’s a couple of, well, I can tell you a multigenerational health record was not even termed till Seqster her and that all had to do with my grandmother. Both my grandmothers passed away, unfortunately to Alzheimer’s disease. My mom was the caregiver of my number one fan who was my 92 year old grandmother who passed away about two and a half years ago. And that was in the middle of us actually building Seqster. I wanted to be able to bring my grandma’s health data, my mom’s health data and my health data in a multigenerational way. And not just on the DNA side but obviously on the EHR side in any other data that we have. And so that’s where the bequeathing data and our health trust idea and future King.
Bill Russell: 06:01 Interesting. Cause one of the reasons, one of the things they talk about is Geisinger has been very effective because they have mostly rural Western Pennsylvania and it’s, they have all this data from generation to generation and it helps them to uh, to care for the, the future generations. So there there’s a lot of value. Am I able to take that multigenerational record to somebody at this point they go, Oh yeah look bill, this is, this is historically in your family. We’re going to proactively do these things.
Ardy Arianpour: 06:30 Yeah. Look at the end of the day, it’s patient authenticated, it’s patient directed. I believe you have to be a CEO of your own health. And unfortunately that is the case. And so you know, another use case is cancer where you know if you wanted to run let’s say a tumor board on yourself and bring together all of the health data in one place and collection of health data because cancer patients have multiple health systems, multiple pathologists looking at their data. Maybe you’ve had your tumor even sequenced and it gets a very complicated and they’re number one issue is actually how fast you can collect medical records. This very simple problem where we believe as we’re leading the nation with Seqsters interoperability technology that is, you know, got nationwide scale access. Now, not just on the health record side, but more importantly on any type of data side, we’ve created the technology to put you again at the center of your health so that even as a caregiver you can collect and share mom and dad’s data or any family members data as long as you know you have that consent and all this happens digitally through the platform.
Bill Russell: 07:43 So let’s take this from two directions. Let’s take it from the patient directive direction and let’s take it from the health system direction. I really want to go to the patient first, but let’s go to the health system first. So, um, is there a model where a health system that’s looking at their mission and saying, Hey look, it’s in the best interest of the patient, that they have this record and that they, they have this aggregation platform. Is there a model where they could partner with Seqster take it into their market? Um, cause a lot of them are just relying on the EHR providers. They’re saying, well eventually they’ll get the genome data in and eventually we’ll get the, you know, the, the fitness tracker data and we would all be in the EHR record. I think I hear that more than I hear, Hey, we’re gonna partner with an innovative company.
Ardy Arianpour: 08:25 Yeah. So what we’re seeing, and you know, having been doing this now for four years, um, we started January of 2016 and I know that sounds like not a long time, but we’ve been laser focused w with a mission of person centric interoperability. That’s right. The patients are the ones that dictate this. But our business model is that that provider or that payer basically licenses our technology and you know, if they want our front end and then it becomes their portal. We’re not replacing Epic, Cerner, Allscripts or anything like that. We’re not an EHR company, but we are re most comprehensive nationwide scalable interoperability solution on the back end. Our back end data model is that standardizer and harmonizer bringing together, you know, Stanford UCSD, the scripts, uh, MD Anderson and NYU all in one place in, in, in less than 60 seconds. Instant and rapid interoperability is what Seqster is all about.
Bill Russell: 09:32 So, uh, at UGM this year, they talked about, uh, care anywhere or care everywhere, anywhere. Well, that would make sense too care anywhere care everywhere. But one of the, one of the things they end up doing is, ah, I present, I’m in Southern California, I happen to present in Florida and I can give them a one time use to a online EHR. They can go and see my medical record. There’s still a problem with that and it’s, they’re going to see my Epic medical record if I happen to go to an Allscripts shop and go to a.
Ardy Arianpour: 10:05 Exactly. And that is, that is the, you know, silver lining actually in the most complex interoperability problem. We hear a lot of solutions that, you know, think that they’ve solved interoperability, but no one actually to our knowledge has solved it as far as we have on the consumer mediated data exchange, not an HIE. And so a lot of interoperability solutions are built for health information exchanges, which have their own problems, but there’s no better person Bill to collect a comprehensive longitudinal multigenerational health record than bill.
Bill Russell: 10:46 So talk about security because that’s going to be the next question.
Ardy Arianpour: 10:48 Absolutely. So we took security bill, um, to the highest degree before we even started, you know, building this, we usually, all these companies, even startups, even the bigger companies, they’ll get together with a group of engineers and then they’ll decide what to build. And we did the opposite. We got together with a group of patients and physicians and asked which should we build? And then we connected or you know, highly sophisticated engineers that knew how to build these things in order to make this so sticky on the patient engagement side because patient engagement is something that really misses, even if you try to solve interoperability on, on, on the specifics on how we’re able to do that and how we’re able to push on it is we started with one system and then moved on to another system and moved on another system and it was all trial and error through our thousands of patients that came in through our alpha and beta studies in the last four years.
Bill Russell: 11:44 So are you actually taking the data? If so, my, my records if somebody wants to try to hack them.
Ardy Arianpour: 11:51 Oh, on the security. Yes. I didn’t answer that. So security, sorry. Yeah, stuff at st Joe’s, you have stuff in Pennsylvania. Yeah. So, so, okay. You know this as a CIO, so if you’re, if you pull this into your cloud. Yeah. So I’m going to get there and I should have answered it before, but I was thinking of something else. So as a CIO, you know this better than anyone. When there’s a health system and you have a million patients on that health system, there’s one encryption key for basically that whole database with Seqster. What’s different is we created 256 bit encryption, right? Or high trust, we’re HIPAA compliant. And that’s the investment we made upfront. But more importantly, it’s the fact that if we have a million patients that are using the technology or the platform to pull everything in, we have 1 million cheese, so different keys.
Ardy Arianpour: 12:42 And so we’ve taken every repercussion to actually make it as secure and private as we can. So if they hack one record, they’ve hacked one record. Yeah, but it’s still jibberish basically it’s scrambled. They can’t make use of it either. Right. But they can’t, they can’t hack the whole database because that’s really difficult to do. But you can do that on health systems and, and, and I’m not trying to say, yeah, you get this. And so from this side, you understand how we’re even more secure than health systems because once that data is transferred, it’s encrypted, right? On that individual level from an individualized health record.
Bill Russell: 13:20 So, all right, so let’s talk about the patient. The we talked about it on one of the shows, the value of the health record. I mean from a security standpoint, we know this, the, the health record is still one of the highest value records out on the market, the a, but there’s value in the record to me and there’s value to researchers. And there’s actually a couple of situations where people are paying people for their health records. They’re saying, Hey, would you like to, does your system allow for me to like donate my record or actually get money for my record for somebody who’s trying to do studies in those kinds of thing?
Ardy Arianpour: 13:56 Yeah, absolutely. So you know, the hardest part of all of this is collection. Ownership starts with collecting. You don’t own something until you actually can collect it. So you collect it, you own it, and then you share it on your terms. Right. That’s number one, number two, and number three, collect, owning, share. But more importantly, you know, we can advance discovery and research and um, push, you know, advancements in medical science through various different ways on recruitment and clinical trials. And you’re gonna see some very exciting announcements around that. Actually tomorrow
Bill Russell: 14:35 I was going to say, do you have any announcements
Ardy Arianpour: 14:36 We have a special announcement tomorrow and we’re going to leave it for tomorrow so that everyone can tune in
Bill Russell: 14:42 you’re killing me. All right. So, uh, so you had me at hello. So I do have my records all over the place. Yeah. So do I like go to your website up, tell you what health systems and you start collecting.
Ardy Arianpour: 14:53 Yeah. So we, again, we’re not direct to consumer. We’re B2B. However, we have given special invite codes to chronically ill patients. And you know, there’s been lots of um, uh, people, they shared their data and how we’ve actually saved the life or two on the cancer use cases size. But if, if a, if a patient wants to utilize it, we’re happy to hear their story and help them. There’s a lot of healthy individuals that contact us. We get contacted daily by dozens of people that want to try the system. However, we’re in super advanced discussions with some, you know, um, big enterprises and we built the mint.com interface of health data where uh, patients, members, users can collect their data in one place. But our business model is the salesforce.com of health care, which people would licensed that are clients that yes, our clients are in the three PS, payers, providers and pharma and, and there’s a fourth. The fourth is some big consumer. Uh, I call them consumer brands, um, without being specific. But consumer companies that want to get in the health care and understand this kind of technology can traject them into healthcare or you know, maybe they’ve, you know, acquired a company or two in healthcare and they can’t really connect the dots. Seqster really connects the dots for healthcare.
Bill Russell: 16:21 So we talked about security, let’s talk about privacy. So, um, so you started aggregating my data.
Ardy Arianpour: 16:27 Yeah, we’ll do it. We don’t do it. So you aggregate your own data we’re the Intel inside.
Bill Russell: 16:34 Okay. But if you’re working with pharma, does my data automatically go to pharma or do I get?
Ardy Arianpour: 16:38 Yeah, so how that works. Let’s say we’re working with ABC pharmaceutical company and they have a thousand person trial for a, you know, X, Y, Z study on a specific disease. And your in that trial that ABC pharma would actually license our Seqster research portal that we built with Boston university to SRP for them to actually launch it to those thousand participants, those thousand participants, that bill was one of those participants or your family members. You collect your data, you agree to the consent of the ADC pharmaceutical company, you share that data in the data sharing environment that we created. The PIs in the pharma company will go ahead and you know, review your data with the cohort and you know, something that would take, you know, several millions of dollars and maybe several years. We can actually accelerate in less than a month for pharmaceutical companies.
Bill Russell: 17:36 What are the things I’d be excited about and I don’t know where you’re at on this is all right, so I have all this data. I even have my family data. It would be really interesting to bring all that together and to do family researches, research on our family. What are we prone to? Those kinds of things.
Ardy Arianpour: 17:54 There’s so many people that want to do that actually, and I will, you know, it’s so funny, you don’t need to be a physician or a scientist to change science or to change healthcare. I really believe this. It’s all about actually having all your health data in one place because once we have our health data in one place, we are empowered as individuals to take action and that’s what’s so important. That’s what’s missing in the whole industry. That’s what’s missing all around the world.
Bill Russell: 18:19 But what you’re saying right now is exactly what Seema Verma is going to say when she gets up there and now she’s going about it a little different. She’s essentially saying, Hey, we’re going to free the data and enable this market to really start to interact with this data and what not.
Ardy Arianpour: 18:32 But yeah, I’m a big fan of Seema Verma and I think what she’s trying to push on person centric interoperability is actually what Seqster built. Fantastic. Not the blue button, but the green button, green button, I call it the green button. Seqster welcome to fabulous Seqster come talk to us at the health conference. The reality is you just got off an airplane, so I just got off an airplane off a red eye. I’m a little tired, but you know, I still got some gas in it. Hey, thank you. Thank you so much at the time.
Bill Russell: 19:03 I hope you’ve enjoyed the conversation. If you’d like to recommend a guest or someone to be on the show, you can do that from our homepage. Uh, recommend a guest. It’s about three quarters of the way down on the homepage. Please check that out. And don’t forget to please come back every Friday for more great interviews with influencers. And don’t forget every Tuesday we take a look at the news, which is impacting health. It. This show is a production of this week in health it for more great content. You check out our website this week, health.com or the YouTube channel, which you can get to from our homepage as well. Uh, if you get a chance to take a look at our newly redesigned guest page, I think you’ll find it a fantastic, I love the way you can navigate through the content. Special thanks again to our sponsors, VMware and health lyrics for choosing to invest in developing the next generation of health leaders. Thanks for listening. That’s all for now.