DeciBio Insights

DeciBio Q&A — Unpacking Takeda & Seqster’s New Real-Time, Massively Scaled RWD Partnership

Digital Health, Health Technology Market

Meet Today’s Interviewees

Emir Roach is the Head of Emerging Technologies, Data and Digital Partnerships at Takeda Pharmaceuticals. A physician by training, Emir lives at the convergence of business, medicine and technology and has developed and deployed scalable solutions in the pharma, provider and payer spaces.

Ardy Arianpour is the CEO & Co-Founder of Seqster, a healthcare technology company that enables organizations to drive efficient healthcare via EHR, DNA, and health device data via person-centric interoperability. Ardy’s career in digital health has been focused on patient empowerment, starting from launching ground-breaking genetic tests and scrapping of gene patents, to interoperability.

Ardy, you’ve described Seqster as the “” of health data. Can you unpack that analogy for us and share the “elevator pitch” version of what Seqster does, what the business model is, and how the relationship with Takeda originated?

Seqster is a SaaS-based healthcare technology company that enables organizations to drive efficient healthcare via comprehensive medical records, EHR data, combining individual genomic profile data, as well as any personal health device data. We put the patient at the center of their healthcare, disrupting all the traditional data silos and enabling a first-of-its-kind health timeline across all data sources through person-centric interoperability. Takeda first heard about us in 2018, actually from one of my digital health podcast interviews.


Emir, being a heavyweight pharma, Takeda is clearly no stranger to using real-world data. What made Seqster a unique partner that was well-suited to what Takeda is trying to accomplish in the RWD space?

For Takeda, patients come first in everything that we do. It informs how we design and enroll patients in clinical trials, how we work to get approved medications into patients’ hands, and how we ensure the safety and efficacy of our medications. When we look at traditional siloed data sets, we observed that they do not satisfy the requirements that we have with regards to the recency of the data, the longitudinality of the data and the completeness, the comprehensiveness of the data. Traditional data providers tap into data pools with which they have relationships, amalgamate them, and update them over a certain frequency. But if, for example, a patient changes geography and they’re no longer in that pool, we’re not able to get that full view of the patient.

With the emergence of platforms like Datavant, which recently struck a partnership with Seqster, not only do we get the end-to-end patient data, EMR data, wearables data, and genomics data that Seqster provides, but we’re also able to enrich that with pharmacy and retail data to create an unprecedented, first-in-class, 360° view of the patient. This allows us to perform granular analytics that can be used for better patient selection, site selection for clinical trials, and optimization of our commercial models so that we can get medications to patients quicker, better understand the safety and efficacy profiles of our medications, and track any outcomes that might lead to label expansion opportunities.

Ardy, as Emir mentioned, two of the biggest challenges with aggregating disparate RWD sources is data completeness (i.e., the relative share of fields completed for each patient record) and data quality (i.e., the degree of variation or error in how each field is collected). How has Seqster navigated these issues in a scalable way?

If the data is missing or wrong from the CCDA or the source, it’s really black and white there because we get the chain of custody data. This is not self-reported data — it’s coming directly from the source and the data from the CCDA nowadays is more comprehensive than is perceived. We have data QA features to automatically detect abnormalities and highlight them for our nurse team to manually curate on the backend. Our visualization is also a great tool that helps our team quickly identify errors. Our self-reporting feature allows users to not only upload their own records to augment the EMR, but also annotate errors and give updated information since we’re able to bring in all the data in real-time.

Seqster does not omit data that is incomplete — we display it as-is. We maintain the provenance of every clinical data point with its original document and allow the viewer to see the original EMR document where the data originated.

When data is complete with names, values, units, and codes, we can (of course under consent) leverage that aggregation and give the user the best experience in viewing it longitudinally. And that’s what Seqster is really good at. If it is incomplete, we fall back to displaying the raw data without interpretation and provide a link to viewing the original document.


A question for both of you — What are the key short-term and longer-term objectives of the partnership between Takeda and Seqster?

Ardy: Takeda is a highly valuable strategic partner. We couldn’t be happier to partner with a pharma enterprise that understands patient-centricity and puts patients first. So the mission of both companies is really aligned there. Secondly, our technology really is foundational. Our solution is built to scale globally across very large and unique patient populations for many diverse use cases and disease groups. We’ve already kicked off the partnership with a couple projects and envision serving as an invaluable RWD architecture for Takeda and for our enterprise life science customers in the long-term.

Emir: Our partnership was a very natural emergence because we are very closely aligned on our goals and values of putting patients first. The investment into Seqster was made by Takeda Digital Ventures, our corporate VC arm, which solves for finding new and exciting companies that align with Takeda’s values and objectives. Seqster is an exemplification of that. As Takeda broadens its digital footprint, reach, and relevance (e.g., our recent partnership with Accenture and AWS), we’re figuring out which foundational capabilities will take us to the next level. When it comes to patient data, we believe that Seqster gives us that first-mover competitive advantage, not from a financial and business perspective, but to serve our patients better and help them in their care journey.


Ardy, several competitors like PicnicHealth and HumanAPI have built solutions similarly aimed at driving patient-centric data integration and sharing. What are the fundamental differences that drive Seqster’s differentiated value as a company? 

Look, it’s a large space, but when you’re talking about data, patients, and technology, Seqster really sweeps the competitive landscape in a few different ways. First, in data scope — we’re able to bring in multi-dimensional, multi-generational data; second, in data scale — our scale of data partners connects 3,000 healthcare providers nationwide (covering over 91% of digital health records in the U.S.); and third in how data collection is automated — we’re not a manual process. We are a technology, not a tech-enabled service like some other players out there. Our EHR data quality is the result of the proprietary backend engine we built that can actually standardize and harmonize all of the data that’s coming from Allscripts, Cerner, Epic or any other backend EHR data source. And of course, our business model is completely different, where we have a white label solution enabling rapid integration. It’s a highly scalable, rapid, and automated SaaS enterprise technology. Nobody can break down data silos and elegantly visualize a longitudinal health record like Seqster.

Our engine can bring together a longitudinal health record in seconds if not milliseconds. Other competitors definitely rely on some old technologies like fax to manually curate their data, which is a very labor- and capital-intensive process taking a minimum of four to six weeks to complete. This is a long time for patients living with complex conditions to wait to collect all of their information. With our pharma partnerships, we can instantly populate data and empower patients to collect that data and consent to share it.

The relationship with Takeda was possible because our missions were aligned in activating engagement for patients and providing a platform that can really connect all the data in one place and connect patients to researchers in a secure and de-identified environment. Many companies in the space say they cater to patients, but their product is often not optimized for patient use. This is another major differentiator.


Emir, any thoughts on Seqster’s differentiation? 

Naturally before investing in Seqster, a due diligence was performed. With regards to Ciitizen, PicnicHealth, and HumanAPI, they probably have some niche use cases for which they’re going to be good. But when it comes to scalability, international expansion, not being limited to data sources with signed BAAs, native integration of patient consent, and modular integration – Seqster stood alone with distinction.

If you factor in the flexibility of how you can integrate Seqster with Datavant to further enrich data, working with Seqster data was a no-brainer.


Emir, in Takeda’s recent press release, you mentioned 12 distinct use cases for the Seqster platform that could be activated in the next few weeks. Any more color you can share on that? 

The use cases across the molecule life cycle are those known and sought after by other pharmaceutical companies, from clinical development, regulatory submissions, and commercial to post-market pharmacovigilance. If we start from the clinical trial end, we want to get longitudinal, real-time data. For example, if you’re running an oncology trial, you want to be aware if your patient exacerbates and goes into an ED as soon as possible. If you’re running a rare disease trial, you want a way to — in a de-identified fashion — keep track of the patients after the trial ends to understand prescription and progression patterns at the cohort level. Without Seqster, we would not be able to do this.

On the commercial end, any patient engagement initiative relies on some inference of what the patient looks like and cares about and what the patient’s current clinical status is. We are finding several opportunities where Seqster can come into play there. Seqster also helps us partner with external organizations. One public example is our partnership with Global Commission, where Seqster is accelerating the development of their platform. We are expanding our Seqster-enabled partnership footprint to other non-profit organizations, payers and providers.


Ardy, does Seqster define “patient-centric” data as “patient-owned”? And how does Seqster balance serving pharma and payor customers through monetization of that patient generated data with advocating for patient rights as stewards of their data? 

Seqster is absolutely patient centric in that it was designed with the patient in mind. We believe that the patient has to feel empowered to truly take control of their health and own that data. You can’t own that data unless you can actually collect it, access it, and use it. We created this platform to empower patients to truly own their data.

This is why we designed our platform so that patients can seamlessly collect, own, and share their health data as they choose. Pharma and payors have realized the need through legislation and process optimization that it is increasingly important to prioritize the needs of clinical trial patients and members. Large enterprises, whether they are blockchain or consumer tech companies, I think may have incorrectly emphasized monetization of data. This is a common misperception of value. The value is from the insights that are derived from that data with the consent of the patient, which can help better monitor and improve their health and their family’s health. There is no inherent conflict between serving pharma, payors, and patients. I think you have to be really careful when you’re thinking about ownership, access, and patient centricity —you have to have a technology that enables all those things for the people.


It’s a great point you make that value to the patient shouldn’t be boxed into this idea of monetary benefit. Can you share any strategies or product-level features that Seqster is working on to return that value of health insights to the patient?  

We’ve created an integrated view where we’re able to superimpose clinical data with fitness data. For example, we can bring all of your different health data into one place and layer on various analytic tools. It already is what I call a “self engaging” platform. The patient only logs in once. It continuously auto-syncs in real-time. The visualization is so important for patients to understand their data. Because one thing that we know in healthcare is that data is not only really messy, but no one actually spends time bringing that data to life. With Seqster, we really cracked the code on bringing health data to life for patients, families, and caregivers. Seeing your different types of data matched with each other and graphed enables so many different things for patients and really is engaging.


Emir, tech giants like Apple, Google, and Amazon have heavily invested in hardware (e.g., consumer devices), infrastructure (e.g., cloud architecture), and interoperability. What do you perceive as these companies’ key advantages and potential challenges in tackling patient-generated RWD and patient-centric records? 

That’s a great question and a controversial one. The tech giants’ approach to healthcare is exciting in the sense that it’s good to see so much attention from these companies and so much funding directed towards healthcare. Some would argue, however, that the approaches are confusing and are hard to contextualize in a broader strategy. Let’s take, Google, for example. Google Health, Google Cloud, DeepMind, Verily. Their penetration into the healthcare space across the different verticals is fragmented. Word is, sometimes these subsidiaries build parallel, redundant and even competing capabilities. We haven’t seen a structured approach to approaching incumbent healthcare players on striking scalable partnerships. There are a couple publicized examples, but it’s not something that has been replicated across multiple organizations yet.

On the data side, let’s take Apple’s health data play as an example. They recently announced that they were able to add some health systems in Canada and the UK and gave a few very specific names. The indication seems to be that they’re signing BAAs with one hospital at a time instead of taking Seqster’s patient-centric approach, which allows us to access any health system that’s using Epic or Cerner or any other EMR.

Due to the nature of their approach, Apple or Google’s approach won’t crack the UK’s data interoperability challenges. Compared to the U.S., the UK is very fragmented and most of the data is owned at the GP level, and they don’t have the interoperability mandates that we have. These limitations apply to a lot of countries in the EU. Only a partnership-supported and patient-centric approach can move the needle in these highly regulated countries.


Ardy, coming from the tech world, do you see things any differently? 

I think the tech world has forgotten about the patient. Whenever a new device or app is created, a whole new different silo is actually added. What the tech world hasn’t figured out is how to build something of value that doesn’t rely on its own ecosystem. Take Apple as an example. Yes, they have Apple Health Records, but they’re just siloing all the data on iPhones because they want to sell you more phones. Their solution is not patient-centric. It’s not for everyone. If you have an Android phone, you can’t use it. It’s tough for a company like Apple to be patient-centric without radically disrupting their own business model. Our business model allows organizations to adopt a patient-centric perspective and really engage the patient.


Emir, a couple last questions for you before we let you go. Given that oncology and rare disease have really dominated the RWD space to-date, what do you see as the “next-in-line” therapeutic areas that patient-centric innovation might be enabling?

Oncology and rare disease attract a lot of attention because that’s where all the hot biotechs play, where we have most of the new mechanisms of action, blockbusters etc. But if you take a step back, the chronic disease space is still ripe for opportunity to employ solutions like Seqster.

Examples include cardiovascular disease, or in Takeda’s field of view, inflammatory bowel diseases. Chronic conditions are ripe for disruption by RWD because their most costly aspect is their exacerbations. When you have access to real-time, longitudinal EMR and wearables data, you can use predictive algorithms to prompt the patient to take action to prevent exacerbations, and more meaningfully, to preventively take better care of themselves, improving their quality of life and lowering the total cost of care.

So it’s really not just the “hot” areas of medicine we should be looking at implementing solutions like Seqster at-scale, but really in general medicine.


Lastly, Emir, taking a step back, what are Takeda’s other key digital transformation initiatives surrounding RWD, both direct (e.g., cloud architecture) and indirect (e.g., novel products RWD might enable)?

I would posit that we are probably addressing issues that all other major pharmas face — creating a robust data governance body so that we can keep track of what data we have; building a robust enterprise data backbone so we can prevent from siloes being formed; creating globally defined protocols with local implementation for leveraging RWD effectively; putting in place different trainings and awareness programs so that someone on the frontlines has the intuition of leveraging data instead of relying on past experience.

These are common issues that all pharma companies face and have been well documented. Employment of RWD data is not just bringing it in-house and crossing your fingers. It’s enveloping RWD with the right protocols, SOP tools, trainings, and change transformation modules in order to get value out of the data.

Disclaimer: Companies listed above may be DeciBio clients and/or customers

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Chris Lew | Project Leader

Chris focuses on digital diagnostic, therapeutic, and remote patient engagement technologies and their impact on personalized medicine and population health. Chris leads market analysis and strategy engagements across the diagnostics and health tech spaces, with a particular interest in the intersection of consumer technology, data strategy, and digital biomarker development. Connect with him on LinkedIn or reach out at [email protected]

Fanny Anderson | Senior Associate

Fanny Anderson is a Senior Associate at DeciBio, with experience in strategy development across the healthcare IT space, including clinical decision support, real-world evidence and digital health. Connect with her on LinkedIn to learn more about her expertise in health technology consulting.

Disclaimer: Companies listed above may be DeciBio clients and/or customers.