An interview with Ardy Arianpour: Building the future of health data

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People ask me what gets me out of bed every morning. I have this big vision about finding ways to use data to improve the health of everyone on the planet. Yes, that’s right, all 7.7 billion of us.

My mission on a daily basis is to find projects that help me on the path towards making that vision a reality. I’m always on the lookout for people who are also dreaming about making an impact on the whole world. I bumped into one such person recently, when I was attending the Future of Individualised Medicine conference in the USA. That person is Ardy Arianpour, CEO and co-founder of a startup called Seqster that I believe could make a significant contribution to making my vision a reality over the long term. I interviewed Ardy to hear more about his story and the amazing possibilities with health data that he dreams of bringing to our lives.

1. What is Seqster?
Products such as mint.com, which enable people to bring all their personal finance data in one place have enabled so many people to manage their finances. We believe that Seqster is the mint.com of your health. We are a person-centric interoperability platform that seamlessly brings together all your medical records (EHR), baseline genetic (DNA), continuous monitoring and wearable data in one place. From a business standpoint we’re a SaaS platform like “The Salesforce.com for healthcare”. We provide a turnkey solution for any payer, provider or clinical research entity since “Everyone is seeking health data”. We empower people to collect, own and share their health data on their terms.

2. So Seqster is another attempt at a personal health record (PHR) like Microsoft’s failed attempt with Healthvault?
Microsoft’s HealthVault and Google Health were great ideas, but their timing was wrong. The connectivity wasn’t there and neither was the utility. In a way, it’s also the problem with Apple Health Records. Seqster transcends those PHRs for three reasons:

a. First, we’ve built the person-centric interoperability platform that can retrieve chain of custody data from any digital source. We’re not just dealing with self-reported data like every other PHR that can be inaccurate and cumbersome. By putting the person at the center of healthcare, we give them the tools to disrupt their own data siloes and bring in not only longitudinal data but also multi-dimensional and multi-generational data.

b. Second, our data is dynamic. Everything is updated in real time to reflect your current health. One site, one log in. You never have to sign in twice.

c. Third, we generate new insights which is tough to do unless you have the high quality data coming directly form multiples sources. For example, we have integrated the American Heart Association’s Life Simple Seven to give you dynamic insights into your heart health plus actionable recommendations based on their guidelines.

3. Why do you believe Seqster will succeed when so many others (often with big budgets have failed)?
The first reason that we will succeed is our team. We have achieved previous successes in implementing clinical and consumer genetic testing at nationwide scale. In the genetics market we’ve been working on data standardization and sharing for the last decade so we approached this challenge from a completely different vantage point. We didn’t set out to solve interoperability, but did it completely by accident.

Next, we have achieved nationwide access in the USA to over 3000 hospitals integrated as well as over 45,000 small doctor offices and medical clinics. In the past few years we have surpassed over 100M patient records, 30M+ direct to consumer DNA / genetic tests and 100M+ wearables. invaluable utility by giving people a legal framework to share their health data with their family members, caregivers, physicians, or even with clinical trials if they want.

All we are doing is shedding light on what we call “Dark Data”- the data that is already existing on all of us and hidden up until now.

3. Your background has been primarily in Genomics, where you’ve done sterling work in driving BRCA genetic testing across the United States. Is Seqster of interest mainly to those who have had some kind of genetic test?
Not at all. Seqster is for the healthcare consumers. We’re all healthcare consumers in some way. Having said that, as you may have noted, the “Seq” in Seqster comes from our background in genome sequencing. We originally had the idea that we could create a place for the over 30M individuals who had done some kind of genetic test to take ownership of their data and to incentivize people who have not yet had a genetic test to get sequenced. However, we realized that genetic data without high quality, high fidelity clinical health data is useless. The highest quality data is the data that comes directly from your doctor’s office or hospital. This combined with your sequence data and your fitness data is a powerful tool for better health for everyone.

4. Wherever I travel in the world, from Brazil to the USA to Australia, the same challenge about health data comes up in conversations. The challenge of getting different computer systems in healthcare to share patient data with each other, otherwise known more formally as “interoperability” – can Seqster really help to solve this challenge or is this a pipe dream?
It was a dream for us as well until we cracked the code on person-centric interoperability. What is amazing is we can bring our technology to anywhere in the world right now as long as the data exists. Imagine people everywhere and how overnight we change healthcare and health outcomes if they had access to their health data from any device, Android, Apple or web-based. Imagine that your kids and grandkids have a full health history that they can take to their next doctor visit. How powerful can that be? That is Seqster. We help you seek out your health data, no matter where you are or where your data resides.

5. So what was the moment in your life that compelled you to start Seqster?
In 2011 I was at a barbeque with a bunch of physicians and they asked what I did for a living. I told them about my own DNA testing experience and background in genomics. Quickly the conversation went to how can we make DNA data actionable and relevant to both themselves and their patients. The next day I go for a run and couldn’t stop thinking about that conversation and how if I owned all my data in one place would make it meaningful for me. I come home and was watching the movie “The Italian Job” and heard the word Napster in the film, being a sequencing guy and seeking out info I immediately thought of “Seqster” and typed it in godaddy.com and bought Seqster.com for $9.99. The tailwinds were not there to do anything with it until January of 2016 when I decided to put a team together to start building the future of health data.

6. What has been the biggest barrier in your journey at Seqster so far, and have you been able to overcome it?
Have you seen the movie Bohemian Rhapsody? We’re like the band Queen – we’re misfits and underdogs. No one believes that we solved this small $30 billion problem called interoperability until they try Seqster for themselves. The real barrier right now is getting Seqster into the right hands. As people start to catch onto the fact that Seqster solves some of their biggest pain points, we will overcome the technology adoption barrier. I am so excited about new possibilities that are emerging for us to make a contribution to advancing the way health data gets collated, shared and used. Stay tuned, we have exciting news to share over the next few months.

7. What has the reaction to Seqster been? Who are the most sceptical, and who seem to be the biggest advocates?
We have a funny story to share here. About three years ago when we started Seqster, we told Dr. Eric Topol from Scripps Research what we wanted to do and he told us that he didn’t believe that we could do it. Three years later after hearing some of the buzz he asked to meet with us and try Seqster for himself. His tweet the next day after trying Seqster says it all. We couldn’t be prouder.

8. Lots of startups are developing digital health products but few are designing with patients as partners. Tell us more about how you involve patients in the design of your services?
Absolutely! We couldn’t agree more. I believe that many digital health companies fail because they don’t start with the patient in mind. From day one Seqster has been about empowering people to collect, own, and share their data on their terms. Our design is unique because we spent time with thousands of patients, caregivers and physicians to develop a person-centric interface that is simple and intuitive.

9. The future of healthcare is seen as a world where patients have much more control over their health, and in managing their health. What role could Seqster play in making that future a reality?
We had several chronically ill patients use Seqster to manage their health and gather all their medical records from multiple health systems within minutes. Some feedback was as simple as having one site and one login so that they can immediately access their entire medical record from a single platform. A number of patients told us that they found lab results that had values outside of normal range which their doctors never told them about. When we heard this, we felt like we were on the verge of bringing aspects of precision medicine to the masses. It definitely resonated very well with our vision of the future of healthcare being driven by the patient.

10. Fast forward 20 years to 2039, what would you want the legacy of Seqster to be in terms of impact on the world?
In 20 years by having all your health data in one place, Seqster’s legacy will be known as the technology that changed healthcare. Our technology will improve care by delivering accurate medical records instantaneously upon request by any provider anywhere. All the data barriers will be removed. Everyone will have access to their health information no matter where they are or where their data is stored. Your health data will follow you wherever you go.

[Disclosure: I have no commercial ties to any of the individuals or organizations mentioned in this post]

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How do we measure health?

I saw a tweet which made me really think about our existing approaches to measuring our health. 

Morgan Gleason is a 15 year old girl who lives in the USA. She was diagnosed with a rare disease, Juvenile Dermatomyositis (JDM) at the age of 11. From her website, "The main symptoms of JDM are weak or painful muscles, skin rash, fatigue and fever." I wonder how many other Morgans are out there? How many feel that their voice as a patient needs to be heard?

I speak to patients regularly as part of my research in Digital Health, and many of them tell me when they visit their doctor, what they want is health. Not Health IT, Digital Health, Health Outcomes, but plain and simple Health. There is too often a tendency for those in health & social care, in whatever function, to prioritise on what makes their lives easier, what makes the system more efficient or even what allows them to increase profitability.  

We're hearing more and more talk about data driven health. For the last decade, I've worked with epidemiologists and health economists in the pharmaceutical industry to use patient data the USA, UK, France & Germany to help decision makers understand how drugs are used in the real world. My work has contributed to speeding up drug development and helping to make drugs safer. So, what kind of data on patients? Typically, data from 'real world settings', i.e. the doctor's office or the hospital. One of the most common types of research projects I've worked on, has been to use these databases to help researchers understand the natural history of a particular disease.  For example, when I look at the data, I can answer questions such as;

  • When were patients diagnosed?

  • What the patients were diagnosed with?

  • Were the patients treated after diagnosis?

  • If so, what kind of drug?

  • Were lab tests ordered?

  • If so, what were the results?

  • When patients were hospitalised?

  • How long the patients were hospitalised for?

What's frustrating for me and others is that the existing data collected from doctor's offices and hospitals doesn't show the full picture of a patient's health. If I have to look at medication adherence, and if the database shows that some patients don't have a repeat prescription for their medication when they're supposed to, why is that? 

The transactional data currently available from healthcare systems doesn't tell me WHY. With 'Big Data' being frequently part of  conversations about innovation in health & social care, collecting even more of the same type of data doesn't seem logical. There are major gaps in existing 'Big Data', and for me, that's patient generated health data (PGHD). It's the marriage of 'hard' data from the system and 'soft' data from the patients that could be the key to meeting the challenges ahead of us.

How do individuals measure their health?

What value might be unlocked if we understood how different people measure their health? The system might currently measure someone's health based upon clinically validated instruments, i.e. blood pressure, blood glucose, cholesterol, and so forth, but how do people measure their own health? More importantly, how can the system accommodate data such as whether Morgan is able to ride her horse or not? 

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More and more people have been using activity trackers such as Fitbit to track how active they are, and even using the social elements of the app to compete with their friends and family. Some are even sharing the data & insights gained from their Fitbits with their doctors. For many medical professionals, the data from consumer devices such as Fitbit has limited or no clinical value, even if they had systems which could incorporate such data into the patient's record. The array of hardware and software increasingly becoming available to consumers to monitor aspects of their health is largely unproven. So what to do? 

It's fascinating to read about Dr Josh Umbehr, a doctor in the USA who not only welcomes patient generated data from devices such as Fitbits, but has built his own computer system in his practice which can accept data from a patient's Fitbit. “We don’t know what all this data means, yet,” Umbehr said, “but I can discuss it with the patients and we can both follow it.” 

I have much sympathy for over worked doctors who are apprehensive about dealing with these new streams of data. Whilst patients collecting all sorts of (unvalidated) data about themselves sounds great in theory, it could be dangerous if used and interpreted in isolation. I even ran a Health 2.0 London event in 2013 entitled, "Information Obesity: A possible side effect of Digital Health?" Having to deal with patient generated health data could even put physicians at risk, as Sue Montgomery points out, "providers could be held liable if they don’t review all information in the patient’s record—if this lack of review leads to misdiagnosis or other patient harm."

However, do patients wishing to share data from their Fitbit signify the emergence of a new era where patients can themselves choose to capture (and share) data that is important to them? Thinking back to the patient databases I work with, if I observe that a patient doesn't visit the doctor for 6 months, does that mean during those 6 months they were healthy, they were well? 

What new discoveries might happen if patients were able to bring data into the system that measured health based upon their own experience? Would that future involve having to reboot Health IT infrastructure as we know it? There is already the pioneering personal health record system called Patients Know Best developed in the UK, which in March 2014 had the ability to integrate data from 100 devices and apps.

However, should we limit patient generated data to structured data like number of steps or number of hours slept? In a thought provoking post about patient generated health data, Dr Scott Nelson says, "Unstructured data gathering tools like Apple’s Siri could be used to capture and store patient verbal input and feedback on regular basis. This unstructured data could be parsed into structured formats that could then be automatically organized, analyzed, and visualized for doctor’s use at the time of care." 

If patients like Morgan were able to use Siri to measure their health simply by speaking into the phone, why aren't we offering that to patients today? Would you feel comfortable sharing how healthy you are feeling by speaking into your phone? Who is thinking about the patient data in the form of digital diaries, video, audio, pictures? Are we heading towards a world where the data on your smartphone will reveal more about your health than the data collected during your visits to the doctor?

Understanding human health

If medicine revolves around disease, what if we could measure and maximise wellness? Dr Lee Hood in the USA aims to see if we could with his 100K Wellness Project. It's an ambitious study that aims to enroll 100,000 people over the next 20 years (subject to funding). What I find fascinating is that Dr Hood wants to quantify "wellness". 

Do we have to reboot the entire system of medicine to truly understand human health? New research suggests people with friendly neighbours and strong community ties are less likely to suffer heart attacks. When was the last time your doctor asked you how friendly your neighbours are? When was the last time your doctor asked you if you feel like you belong to a community? Even if they did ask you these questions, where on the paper form do they record such information?

Where have you lived? In Bill Davenhall's TEDMED talk in 2009, he shows how where have lived can impact our health. Yet, our place history is not in our medical records. Now, an electronic health record (EHR) is defined as a systematic collection of electronic health information about an individual patient or population. Ironically, when EHRs are being developed, how many stop to ask patients how THEY measure their health? 

It's encouraging to read of a system that is building technology today which allows us to understand what's important to a patient. For example, the Hudson Center for Health Equity & Quality have developed a "system that captures patient data on who the patient actually is, what is important to the them and what’s preventing the patient from getting the necessary care." We need more institutions to take these bold leaps forward. 

The future

Whilst it's clear that health & social care systems are being stretched beyond their limits, what's not clear is how we prepare our people, policies & processes to be able to cope with an increasingly complex and uncertain future. Just because we've measured our health in a certain way up till now, do we keep doing the same in future years? Can we really accommodate the needs of all stakeholders? Who will be the winners and losers in this new era? Technology is merely the tool here, and probably the simplest factor in the equation. Ultimately, it's the combination of people, policies and processes moving in tandem that will trigger the change many of us are hoping will occur. 

Moving forward won't be simple or easy. Yes, change is typically tough to navigate and often downright terrifying. However, the inspiring Sir Ken Robinson reminds us that "imagination is the source of all human achievement". Yet, the most dangerous words I keep hearing from decision makers in health & social care are "We've always done it this way". Is your organisation tapping into the imagination of your employees?

I'm curious to know what health means to YOU, and how YOU measure your own health? Feel free to leave a comment below, reply to me via Twitter or email. 

[Disclosure: I have no commercial ties with the individuals and organisations mentioned in this post]

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