May 12, 2020

Episode 14: Empowering consumers to collect, own and share their health data

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Podcast

Description

On this episode of The Handoff, Dan speaks with Ardy Arianpour, CEO and co-founder of Seqster, a healthcare platform that empowers consumers to aggregate their medical records, genetic data, and fitness data from wearables and other personal health devices into one place. 


Ardy grew up in San Diego, the “mecca of genomics,” as the son of a breast cancer survivor, two experiences that shaped his early interest in the field. He was one of the very first people to have his genome mapped and recognized early on that there was a huge opportunity to connect data from disparate sources like wearables, Ancestry.com, 23andme and EHRs. Inspired by Mint.com, he set out to create an individualized health record that would enable people to improve their health by collecting, owning and sharing their data. 


He shares with Dan how Seqster combines data interoperability and patient engagement to facilitate meaningful conversations between caregivers and patients and ultimately, drive better health outcomes.


Podcast

Transcript

Dan:
Ardy, welcome to the show.

Ardy:
It's a pleasure to be here on your podcast, and look forward to the discussion today.

Dan:
Awesome. Ardy, tell us a little bit about yourself. I know you're one of the first people to have your genome sequenced. You have a deep background in genomics. Then you started Seqster, which is kind of a little bit different from the genome space. Can you tell us a little bit about your background?

Ardy:
I got into research at a very young age. I was lucky enough to be from San Diego, California, the Mecca of genomics, where really genomics was born. Then pushing the envelope with Illumina sequencing technology and lots of other things going on. When I started out in the Salk Institute, I started working on BRCA one and two transgenic mice genes. The research was within cancer. My mom's a breast cancer survivor. That's what motivated me to get into sciences. Long story short, in my early 20s, got involved in next-gen sequencing and taking next-gen sequencing actually to the clinic and coming up with the first clinical exome test where me and my co-founder, Dr. Shanley, here at Seqster, launched that in 2010 into the marketplace.

Ardy:
At that time, most people didn't know what DNA sequencing really even was because the consumer genetic side wasn't really hitting the market and we were really on the forefront of applying this next-gen sequencing technology to the clinic. I happen to be one of the first people to get my whole genome sequenced, I realize that your DNA data doesn't tell the full story and was intrigued with all the data that was really siloed and happened to be on that dark side of siloing, that data and we realized that there's more to health data than just your DNA data. That's where it all kind of began.

Dan:
Awesome. At what point did you have this epiphany of like, "I can figure out a way to get medical record data and combine it with both fitness and the genomic stuff"?

Ardy:
It was a complete accident. That's the funny part. Because we came from the lab space building one of the world's largest laboratories that hit on hundreds of different types of molecular diagnostic testing, we learned a lot about what not to do. One thing that we wanted to do in our next venture was not to deal with the lab itself. We didn't want to build another lab, and so we thought, "How can we connect all the data that's already existing within the cloud as the cloud business was increasing and expanding?" As we know it today in 2020, the healthcare cloud business is a thriving market there with AWS, Azure and Google Cloud and Salesforce, Health cloud and lots of other things going on there. More importantly, there was tailwinds and the timing was just perfect. Meaning there were millions of people that got a direct-to-consumer genetic test from like a 23&Me or an Ancestry DNA.

Ardy:
There's hundreds of millions of wearables out there, whether you have an Apple watch or a Fitbit or a Garmin, or even a medical health monitoring device, such as Dexcom for CGM, continuous glucose monitoring, as well as all of the health data information or medical record information being digitized and put within portals that you can access from UCSF, UCSD, and Cleveland Clinic and so forth. And so, we just wanted to connect all of these pieces together. We just didn't know how hard it was going to be, and coming from DNA sequencing backgrounds, when you look at DNA sequencing, Dan, it's just pretty simple. It's ATCG, even though it's 3 billion letters long when you were dealing with genome data, a lot shorter, if you're dealing with exome data or genotyping data, but at the end of the day, it doesn't matter what lab it comes from. It's still ATCG, ATCG.

Dan:
Yeah.

Ardy:
But when we started taking a look at the fitness data and the medical record data, it was so messy. That's when we knew that we were embarking on a bigger problem, when an ex-executive from a very large health system told us that we've cracked interoperability and we didn't really even know what that was.

Dan:
Yeah. That's a good point. This is a Holy grail of healthcare, and it's in the news all the time. The government is trying to figure it out. There's been letters from big electronic medical record companies opposing interoperability or celebrating it. It seems to be a very hot topic, but can you give us a simple definition of what interoperability is and why it's important?

Ardy:
It really depends on how you look at what interoperability is. At the end of the day, there's three parts to interoperability. There's semantic interoperability, there's structural interoperability, and there's foundational interoperability. Interoperability is just the ability of software or computer system exchange and being able to make that information useful. How to make it interoperable is the big healthcare problem. It's a $30 billion-plus annual problem in our country, and that's annual. This is where, it doesn't matter if you're dealing with DNA data, EHR data, or fitness data, for example, your 23&Me data is not interoperable with your Ancestry DNA data. There's no way to compare that. Your Epic data isn't interoperable with your Cerner data and Allscripts data and so forth. And so, this affects so many interventions and it affects the patient at the end of the day because patients and people have data from disparate data sources. If they can't bring it all together within an exchange and make that information useful in one system, it's not interoperable.

Dan:
Right. I think the way we've been doing it in healthcare in the past has really been a manual process. It's faxes, it's pages, it's phone calls, it's weeks and weeks of waiting for data to be mailed in big manila envelopes across the country so that people can put this data together. Even then, when you have the whole packet of paper, it's still impossible to weed through it. Even in the electronic age, we still are faxing things back and forth. So it seems like a lot of people have tried to tackle this Apple, Microsoft, Google, others, and they've been somewhat unsuccessful or they've gone about it the wrong way. What is Seqster doing different?

Ardy:
There's a clear answer there. You'll appreciate this being an innovator yourself, being a practitioner and being in healthcare for so long. Someone of your stature understands this from a whole new perspective. What we've done differently is that we've involved the patient first and not the engineers. I think what a lot of these tech companies do is they get a bunch of smart and brilliant, talented engineers and business folks and then they decide what to make. Versus getting a bunch of smart engineers and talented folks and then going directly to the source of the people that are going to be using this sort of software.

Ardy:
That's where we nailed it. We started with the person first to create this person-centric or patient-centric interoperability technology. Now, as you say, everyone is talking about this. When we started early in 2016, people were still talking about it. But I think last year in 2019 was the first year we saw where CMS and ONC were pushing the new rules. Just coming back from Health Datapalooza in D.C. just two weeks ago, the CMS-ONC new rules that are supposed to be unveiled, hopefully, by HIMSS in March in a month should set the tone of patients accessing and controlling their data. That's what Seqster is all about.

Dan:
Yeah. I've seen the platform, I've been in the platform. It's an amazing tool and you really can see everything lined up in chronological order and with insights that you would never get if you didn't have a platform like this. You'd have to log into three, four, five different systems. I think that's a pretty cool way to understand your health data. Your website talks about being person-centered interoperability. What does that mean? How is that different than just regular interoperability?

Ardy:
It's the fact that everyone thinks within interoperability between provider to provider, payer to payer, et cetera to et cetera. We think of it with putting the person or the patients at the center of their healthcare, disrupting all of the data silos, whether it's their episodic EHR data, their continuous monitoring and wearable and fitness data, or their baseline genetic data, and bringing all that information into one record, which I call the individualized health record, or your lifetime health record. Then allowing that person that collected the data to share that data on their terms. That's person-centric interoperability. It's patient-mediated, consumer-mediated exchange. Versus a health information exchange that breaks down.

Dan:
Right. So instead of the patient going and saying, "I need you to send my records somewhere," the patient has the record and can send it wherever they want on their terms in their way.

Ardy:
Exactly. We took this approach from finances, actually. It was an inspiration for mint.com, where you can bring your Wells Fargo, Bank of America and student loans together and see your net worth. I always asked the question, "Why can't I see my net health for myself and for my family members, and then being able to share that with various different providers?" When you do that, magic happens at the intervention level.

Dan:
What are some of the awesome use cases that Seqster has been carrying out? I know there's some news around pharmaceuticals, there's some research data that you're helping connect records for clinical trials. Talk to us about some of those great impacts that you're having on the healthcare community.

Ardy:
One key thing is, with Seqster, we've realized that we really hit on patient engagement. It's really interoperability plus patient engagement equals Seqster. That helps the strategic initiative for lots of various different enterprises within healthcare, whether that's pharma companies or payers or even providers, with the challenge in improving patient outcomes. If we take the clinical trial space as an example, over 80% of clinical trials are delayed. Over 50% of clinical trials fail to recruit patients. About 80% of patients believe pharma companies have a responsibility to provide a product or a service associated with their health-related products that they're getting. This is where the Seqster platform really empowers patient engagements for clinical trials, and we couldn't be more happy with the backing of Takeda pharma that we just announced just past Thursday, on February 13th, investing as our first strategic investor in Seqster for this very reason.

Dan:
Congratulations on that, by the way. That's an awesome milestone in the company, and it just shows the value that you're adding and some of the use cases of bringing patient-centered data to the market. On the other side, on the clinician side, what are some of the ways that, let's say Seqster becomes adopted across the entire healthcare system, which it probably should at some point, how would physicians and clinicians at the frontline use Seqster in a way that would actually also benefit the patients?

Ardy:
Yeah. I think part of the problem with providers right now, and if you take any type of provider, the key thing is, how do you aggregate multiple EHRs to reduce time to first visit of care? That is not only just a financial burden, but it is a caregiver burden. It is a doctor burden. It's a burnout burden, which you know from your standpoint better than anybody, I think this is where we've created something that hits on instant interoperability. Not just interoperability, but as you've seen the platform instantly you can connect multiple health systems, your DNA data, and your fitness data, and any type of data source and bring it all together within just seconds if not minutes. That's just never been possible. This has been, like you said, the dream and we've accidentally kind of fell on this. And for providers, it is about how fast you can aggregate the medical records and how you can reduce that time for first visit for the care and get the right intervention, as well as involving the patient in that patient journey.

Dan:
Yeah. So you can actually get a full picture of the patient and make decisions off of the data that you don't have access to. I mean, and one of the things I think about is all these apps that are coming out of healthcare are really fragmenting healthcare more. There's now you can go to 23&Me and get your genomic data. Then you can go over here and get this on-call $10 copay virtual visit with a physician. Then you go to your primary care physician at a large health system and each piece has a piece of your data and none of it aggregates together.

Dan:
So when you actually have, let's say an emergency, my background's emergency nursing, you're in the emergency room and I have to ask you all these questions. If I had that and could look through it quickly and get insights into what you were presenting with today, across all of those historical visits, I think it just changes the way you make decisions. You don't have to rely on people remembering things or not adding critical pieces of data there. I think there's a big opportunity for shifting clinical decision making with having the full story.

Ardy:
Absolutely. I think you hit on something that I forgot to mention is, the full story on the patient, we call it the 360-degree view. When you can provide a 360-degree view on the patient for the physicians and any providers, you bring a meaningful dialogue between the care teams and the patients. I think that's what exactly you're stating.

Dan:
Yeah. One of the other caregivers that we forget about is the family caregivers. I know you're working or you have something called multi-generational health. Can you talk a little bit about how you're supporting families in understanding their total family health a little bit better?

Ardy:
Yeah. That's a personal story, and I'll try not be so long winded on that. But both my grandmothers, unfortunately, passed due to Alzheimer's disease. No reason to be sorry, it's all part of life. But my number one fan, my 92-year-old grandmother, who passed away about three years ago while we were building Seqster actually inspired me in coming up with the multi-generational health record. What that was all about was, how can I get my grandmother's data, her DNA data, her medical record data and all that other good stuff, and then combine it with my mom's data and my data, and then pass it on to my children one day?

Ardy:
The result of that is the multi-generational health record. It also was how we came up with the caregiver view by working with the Alzheimer's community centers and learning how it is very hard to obtain not only information on this type of population, but more importantly, how do you actually engage the caregivers with the data of their loved ones? There's a lot of motivation there, and I think this is where nurses really come into play and can change the whole dynamic with a tool like Seqster, because nobody understands caregiving better than nurses.

Dan:
Well, I can't argue with that, Ardy. If you take a nurse-first approach, you're definitely a friend of me and of our company, Trusted Health, because that's what we do as well. Yeah, I think the frontline caregivers need that information. There's definitely populations, like Alzheimer's, dementia and a whole host of other ones, where data gets lost as the disease progresses. So do some family history, so there's some interesting ways to actually pass down a new heirloom almost, which is your family's health history, which is really cool. Flipping it a little bit to a conversation around the security, because I know that's coming up in everyone's mind and I know this is probably the number one question you get asked every time you go and speak, talk to us about the data security piece and what you're doing about that.

Ardy:
Yeah. We took the security and privacy piece, as you can imagine, as the number one priority. A lot of companies that begin don't do that, because they don't think about the scalability. But all we thought about at the beginning with Seqster was, if we really can crack this, and if it's going to be scalable, how can it be secure and private? And so, we built a highly sophisticated infrastructure on security where we're hosted on a HIPAA compliant and high-trust certified server, as well as it being 256 bit encrypted.

Ardy:
Dan, I think you coming from a health system background and previously being at Kaiser, you would understand that, even at Kaiser, for example, you got, I don't know, 10.2 million or so patients and the whole database as one encryption key. That's not just Kaiser, Cleveland Clinic's the same, Andy Anderson is the same. UCSF's the same. Stanford is the same. But with Seqster, when you use our technology, if we have a million patients on the platform, then we have a million encryption keys, as an example.

Ardy:
If we have 10 million patients using the platform, we have 10 million encryption keys. That happens because there's no better way to secure data then at the collection, and because Seqster hits on bringing all that data together from chain of custody by the person at the source, we're able to encrypt that data at the beginning and that person has all their data encrypted within their own encryption.

Dan:
That's a key issue because, every morning I get Becker's Healthcare Review and I think in the top 20 articles every morning, there's some sort of ransomware hack, stealing of data, some sort of slip up that happens. So I think the more we can get better at encryption is the key. So I appreciate that. What's on the roadmap for Seqster? You've solved interoperability, you're starting to get contracts and funding. Where are you going to take this? Where's the rocket ship headed?

Ardy:
That's a really good question. I think it's a ready to go intracellular. We're ready to leave this place.

Dan:
That's spoken like a true scientist.

Ardy:
Yeah. No. I think what's really interesting with what we've been able to build is, because we focused on really a technology and we've come up with a very interesting SaaS business model, where it really hits on five difference key segments. Whether that's the pharmaceutical industry for clinical trials, whether that's improving star ratings for payers, whether that's aggregating multiple records to reduce that time to first care for providers, or if it's just empowering a foundation with our platform to empower their members to collect data. As well as, some interesting consumer brands have approached us that want to use this technology to get it out to the masses. And so, I think the potential on Seqster, sky is definitely the limit.

Ardy:
Clearly, at the beginning here, we're backed by one of the world's largest pharmaceutical companies. I think that gives us a lot of credibility, to have the backing of Takeda Pharma and Takeda Digital Ventures. That's going to accelerate patient clinical trials and recruitment and e-consenting and re-consenting, but it doesn't just stop there. We couldn't be more excited about the overwhelming response from not just enterprises, but more importantly, patients that are interested in this sort of platform. We want to make sure that we keep true to our mission because that's how we got here, and that's how we've lasted so long, and that's how we've solved the problem. I think there's much work to be done. This isn't an easy problem to keep solving, but we are putting our blood, sweat, tears, and DNA into this technology and making it a more robust day in and day out and we're so excited about the opportunities.

Dan:
Yeah. I think it's along the same lines as what we're doing here at Trusted, which is changing the industry from somewhat of the outside. The startup game, trying to push a legacy industry to do things differently. We've done that from the staffing area and you're doing it from the data interoperability data area, and you're seeing the traditional players who have benefited off the broken system really resisting that. So I'm excited to see where a nimble startup with an awesome team can take it and actually make some change while the others just write letters back and forth through their lawyers. So it's kind of fun to watch from the outside, but thanks again, Ardy, for being on the show. Where can we find you? Where's the best place to get more information about you and Seqster?

Ardy:
Personally. You can find me on LinkedIn. You can follow me @ArdyArianpour, or just follow Seqster, the company, on Twitter. You can follow @Seqster for the company. If anyone wants more information about our technology, email info@seqster, that's S-E-Q-S-T-E-R,.com. Dan, it's just been a pleasure. Thank you so much to you and Trusted Health for having myself and the Seqster story on this wonderful podcast. We believed everyone is seeking health data, that's why we started Seqster.

Dan:
Awesome. Thanks so much, Ardy.

Ardy:
Thank you.

Dan:
Thank you so much for tuning into The Handoff. If you like what you heard today, please consider writing us a review on iTunes or wherever you listen to podcasts. This is Dr. Nurse Dan. See you next time.

Thank you and welcome to the Trusted Community!
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