Seqster’s Perfect Timing, Powerful Platform Might Change Health
By Allison Proffitt
September 18, 2018 | If you considered yourself an early adopter and tried to start consolidating your personal health records in the earliest days of Google Health or Microsoft Health Vault, you may remember the process with a good deal of frustration or just a sense of futility.
But Seqster, a privately-held health data management platform that emerged from stealth mode this past February, believes they have gotten it right this time.
“We created the first consumer-drive technology platform where it’s you in control of your health. You get to collect, own, and share your data on your terms,” Ardy Arianpour, Seqster’s CEO & Co-Founder, told Bio-IT World last week.
Arianpour—with a background that includes stints at Cogenics, Ambry Genetics, and Pathway Genomics—founded Seqster with Xiang (‘Sean’) Li who serves as CTO. (They were at Ambry at the same time.) Dana Hosseini is the third co-founder and Chief Innovation Officer.
Arianpour says the founders were frustrated that sequencing data wasn’t connected at all to health records. “All we wanted was a dashboard. We have dashboards for our cars, we have dashboards for our finances, but we’ve never had dashboards for our health. We started at that very simple concept of wanting to make dashboards for our own health. It grew into this amazing problem-solve of interoperability.”
For the past three years, Seqster’s team of 25 engineers has been “cranking away at the unstructured data” to build a HIPAA and HITRUST-compliant platform that currently connects users to more than 9,300 healthcare providers covering 2,000 hospitals, 8,400 medical and specialty groups, and 300 cancer center locations nationwide, with additional providers added daily. Users log into their health records through the Seqster portal, and the platform standardizes and harmonizes data directly from the data sources: EHRs including Epic, Cerner, Allscripts, McKesson, NextGen, and athenahealth; consumer genomics portals like 23andMe; and wearables like the Apple Watch, Garmin, Withings, and even Jawbone.
“We bring electronic health records, DNA and genomic information, as well as fitness wearable information all in one place. We solved interoperability—this $30 billion problem—on accident,” Arianpour said.
That’s some accident.
Seqster claims to be the only technology capable of enabling the majority of 350 million Americans to instantly connect to their EHR(s) along with major fitness/wearable devices, and consumer genetic labs. That data, once they are connected, are displayed beautifully and longitudinally—for as far back as you can access your electronic records. Users click through screens, comparing lab results over time, viewing comprehensive records of procedures and vaccinations, and comparing health data to activity records.
Standardizing and harmonizing the data from all of the data sources is the real secret sauce. “I call it the dirty work,” Arianpour says. “We had a significant technical breakthrough on the EHR side, because even your name is different in, let’s say, one Epic version than another… We built an automated process on the machine learning side in order to automate it and make it faster. That’s how we’ve achieved nationwide scale.”
Timing and Technology
Arianpour is happy to explain why Seqster is succeeding where Google, Microsoft, and others haven’t.
“They failed because one, their timing was wrong; two, there weren’t tailwinds; three, they weren’t taking the right approach. They weren’t taking the right consumer approach,” Arianpour says.
Seqster is benefitting from industry tailwinds, Arianpour admits. “Our timing was impeccable for actually the execution of what we’ve made.” Millions of people have had direct-to-consumer DNA testing; hundreds of millions of wearables have been sold in the US. Add to that the 2014 federal mandate that healthcare providers adopt and demonstrate “meaningful use” of electronic medical records (EMR), and it’s clear that the timing is on Seqster’s side.
“We put you—the person, the individual, the consumer—at the center of healthcare, disrupting the data silos, bringing all that health data together,” Arianpour says. “There’s a lot of data out there—what I call ‘dark data’—dark data, for example, that you have in your Apple Watch. That data is being siloed within your watch and within the cloud. There’s all this information from that data that could be so useful to your longitudinal health record, or, more importantly, for your being the CEO of your own health and dictating and controlling your data.”
It’s a grand vision, but the business model doesn’t yet let just anyone sign up to be the CEO of their own health. There are customer service bandwidth challenges, Arianpour says. “We built the technology so that we can deploy it to enterprises that can get it out to masses of folks, instead of us having to market it to masses of people.”
Seqster plans to grow its scalable, nationwide platform working through a “B to B to C” model. The platform is deployed to businesses and enterprises, “to whoever is trying to bring some type of universal patient portal of some sort for their members, for their participants. That could be a pharmaceutical company that’s running a clinical trial and may want to fast track data collection for their members. That could be a foundation that wants to bring a benefit tool to their members and really empower their base to find the disease their fighting for,” Arianpour says.
So far, Seqster has announced partnerships with the Boston University Ryan Center to use Seqster to support patient recruitment and incorporate digital health metrics for enhanced assessment and monitoring in a Traumatic Brain Injury (TBI) Study; with the San Diego Blood Bank to help blood donors and their families integrate, access, manage, and own all of their available health data in Seqster’s private and secure ecosystem through the SDBB RedConnect donor portal; and with George G. Glenner Alzheimer’s Family Centers, Inc. to improve Glenner Centers’ participant and family member care coordination and decision-making.
There are Seqster products fit for each use case. The Seqster Research Portal lets researchers view anonymized data from consented participants. “Researchers get to use a different lens of the Seqster technology,” Arianpour explains. For instance, in the Boston University TBI study, “BU researchers can grind through the data that was longitudinally collected.” HealthOne is Seqster’s consumer-facing, personal product. HealthTrust is a legal framework to preserve and pass on medical, DNA, and fitness data to family members or trusted recipients according to your preferred timing. And yesterday, Seqster launched its Caregiver View feature that lets caregivers aggregate and manage all of their loved ones’ electronic health records and any genetic or wearable data.
If you do have access to Seqster through an enterprise, then, how much of your health data does that hosting enterprise have access to? “That would be worked out between the enterprise and the individual,” Arianpour says. “It’s all based on the consents of the individuals. Our ethos of the company is that the users own that data. If they wish to consent, it’s their data at the end of the data. The users never actually pay to visualize or utilize the system itself.”
Arianpour envisions a marketplace for health data sharing led by individuals. Seqster has been working on the first step: to collect comprehensive, longitudinal health data. “We really do believe that the final step here is for you to generate value,” he says. Plenty of companies are trading on consumer and patient health data, but Arianpour believes that Seqster’s model will “enable now a whole new health data sharing economy as a next step.”
And although Seqster isn’t facilitating such a marketplace yet, it’s coming. “You will be able to [sell Seqster data]; we haven’t opened up the marketplace yet,” Arianpour said, leaving a timeline vague. “We’re working through our partners and we’re doing this through our partners to begin with.”