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


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, 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 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 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 and bought 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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The dark side of wearable technology

An update on my talk in Boston, Will advancing technology make doctors unemployed?. 

It's confirmed for Fri April 11th at 12pm. The format will be a lunchtime session, with time for questions, and tickets are free. I believe there are still a few tickets available. Big thanks to Maggie Delano, Joshua Kotfila & Hack Reduce for helping me make this event a reality!

So, Wearable Technology, we are hearing more and more about it in 2014. New research is forecasting that wearable tech will become even more popular than tablets. Our lives will change, our health will improve, and generally it's simply amazing, right? The use of Google Glass in Houston to allow sick kids to virtually visit the zoo is one of the wonderful applications I've seen. Today, the headline in the local newspaper in Boston was about a local hospital that is the 1st hospital in the USA to employ Google Glass in everyday medical care, expanding it's use across the entire Emergency department.

However, my views on wearable technology have been challenged recently, which prompted me to write this blog. There is a dark side to this technology, and it's fascinating to see the headlines touting the benefits but not always mentioning the risks.

I was invited to speak at an event in London, hosted by NESTA in March 2014. The event was titled, Data, health and me: the future of people-powered healthcare , and I shared my research on the emergence of personal data marketplaces & the future scenario where patients can profit from selling their health data which has been collected using wearable technology. My research has also been cited in the recent report, Refilling the Innovator's Prescription: The new wave of medtech, produced by NESTA & Silicon Valley comes to UK,  

There is a great Storify summarising my talk, as well as the talks by the other 3 speakers.

One of the exercises we were set, was to examine a possible future in the year 2024, where it's so lucrative for patients to sell their health data, that they can use wearable technology to 'amplify' their illness or even perhaps give themselves an ilness? It sounds preposterous, but look at what happens today in India. Deliberately maiming children to increase profit from begging. As healthcare costs continue to spiral, OUR personal health data, will only become MORE valuable in the future.  

The discussion in our group was thought provoking, as our small group discussed the moral, social, legal, & cultural implications. How would a doctor know that your illness occurred naturally or you used wearable technology to give yourself the illness? What circumstances would compel healthy people to do this? Would it be the poorest sections of society who realised one of the few assets they have is their health data? Would there a black market in 'patches' that when applied to the skin would give you diabetes? All of this really made me think again about the concept of selling our health data to governments, pharmaceuticals & health insurers. It's not that simple as I originally anticipated, and I'd welcome comments from readers on the intersection of wearable tech, personal health data and these new marketplaces. Kudos to Jessica Bland & Cassie Robinson for hosting & curating this event. There is a great video with soundbites from participants, definitely worth watching. Incidentally, on the same day, there was an event in New York, on the Social, Cultural & Ethical Dimensions of “Big Data." I'm proud that the UK is not lagging behind the US when it comes to thinking about the future.

I came across a Google Hangout from an event in New York, discussing Augmented Reality & Privacy in the future. Featuring John C Havens, Dawn Jutla, and Jules Polonetsky, it was an inspiring 1 hour. Again, speakers who made me rethink my beliefs, assumptions and attitudes towards wearable technology with their sharp insights.

Think about the use of Google Glass in the Boston hospital. When rushed out of the ambulance into the ER room, are you really going to be in a position to ask where your face or voice data may be going, and who has access to it?

It's scary enough to consider these questions when thinking of our own privacy & security, but even more frightening when thinking how wearable technology could be used to do harm to our children? Fast forward 5 or 10 years, and if most kids are given wearable technology so that their parents, teachers & doctors can monitor their health and movements in real-time, are we considering that these data are also of interest to criminals? Children may be warned not just to avoid talking to strangers, but to avoid strangers with laptops sitting next to them on a train as their personal data may be being hacked!

An article this week reports how "Companies are ignoring serious security issues in their rush to release next-generation wearable devices, according to Symantec."

There are other risks associated with the expansion of wearable tech in our lives, but I've highlighted just a couple of scenarios that warrant further thought. It's important that we find a balance between creating conditions that encourage entrepreneurs to take the risks to experiment with these new ideas, but at the same time, we can't let our enthusiasm for new shiny gadgets blind us from discussing how we govern use of this (or any) technology in society.

I don't know if we have the answers, as we are not even confident in defining the questions. However, the wearable technology market is evolving at such a rapid pace, it's critical that we take time out to both, ask those questions, and answer them. Without that pause, we run the risk of society eagerly adopting and evangelising these products without pausing to consider the ramifications on different members of our communities.

If you are in Boston this week, and can't attend my talk on Friday, I'd definitely like to connect, especially if you're a wearable tech startup.  

[Disclosure: I have no commercial ties with the companies/individuals mentioned]

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The future of your health data

Your health data usually belongs to someone else. If you go see a doctor and are diagnosed, the electronic record of that diagnosis is stored and could be part of a much larger anonymised dataset. If you're in the US, you may be one of the 180 million patients whose health insurance claims data are part of the MarketScan data from Truven Health Analytics. If you're in England, you may be aware of the government's plans to build a dataset, called containing the GP & Hospital data for the 53 million patients who live in England. If you use a activity tracker, such as FitBit etc., you're once again giving your personal health data away, which may or may not be sold in the future.

Naturally, one of the important applications of all these data are to improve human health, especially when it comes to medical researchers looking to understand how we get sick, and how we respond to drugs & vaccines in the real world. These data are also valuable to health insurers and healthcare providers when it comes to improving their services. 

Nearly a year ago, at TEDx O'Porto, I shared my radical vision of how 7 billion people could get paid for sharing their health data, as well as having full control over who can access that data. Many leaders in the healthcare arena have laughed at my dream, or have responded with silence. It tends to be patients & startups that get most excited at my ideas. That's understandable, as we are talking about big changes in how we collect health data, store it and sell it. These changes are not going to happen overnight, but I'm pleased to see that changes are happening faster than I anticipated. 

I read an article today in MIT Technology Review about a New York based startup, DataCoup. According to the article, "DataCoup are running a beta trial where people get $8 a month in return for access to a combination of their social media accounts, such as Facebook and Twitter, and the feed of transactions from a credit or debit card." Looking at DataCoup's website, it claims to be the 1st personal data marketplace. 

Interesting, the article, also says "The company also might offer people the option of sharing data from lifelogging devices such as the FitBit or parts of their Web search history." When I tweeted earlier today, DataCoup confirmed that incorporating health data is in their plans. 

The dawn of a new industry?


This news is extremely exciting for me, and gives me hope that 2014 is likely to be a turning point in raising awareness of how valuable our health data is. If you suffer from multiple diseases, and take multiple medications, your data may be more valuable to 3rd parties than someone who is healthy and not on any medications. Many entities currently profit from using your health data. Time for patients to share in that profit?

There is also a London startup called Handshake that is also a personal data marketplace. Their website states, "Handshake is an app and a website that allows you to negotiate a price for your personal data directly with the companies that want to buy it.". They appear to be in a closed beta at the moment. 

Then you have the concept of patient data co-operatives. Our Health Data Co-Operative is in the US, and has recently been recognised by the White House as playing a role in promoting "Data to Knowledge to Action". The founder, Patrick Grant, states, "Our Health Data Cooperative is built on the premise that Patients should benefit economically from access by third parties to their health information."

Over to Europe, and I recently came across HealthBank. A patient data co-operative based in Switzerland, but aiming to build a global secure depository for patient data. Their website talks of patients having "a HealthBank account,  to store, access, manage and share their health data. And users can earn financial and other returns on their health data, similar to receiving returns from a bank account."

You've heard of Bitcoin, the cryptocurrency that's hit the news? What if you could trade your health data for Healthcoins that could be used to pay for your healthcare or for healthy food? There is a guy in the Netherlands, Andre Boorsma, who has put forward the concept of Healthcoins. I'm curious - would this concept be tried in Emerging Markets first? 

What's the catch?

Exciting stuff, and we are entering a new era in the creation & use of personal health data. However, there are important hurdles to overcome. The first one is trust. The companies listed above have to build trust with the individuals who would be sharing data. Building trust takes time, unless you partner with an existing brand that is already trusted. Would you be more willing to use the services of DataCoup, Handshake, OurHDC, or HealthBank if they were associated with Amazon or Samsung? 

The second hurdle relates to privacy, security & governance. Do we have the technology in place to genuinely keep our personal data private & secure in these emerging platforms? Do we have the legislation (both country level & internationally) to fairly govern the sharing, management and trading of these data? There is also the thorny issue of obtaining informed consent. The vulnerable, such as a person with Dementia who may be given a Fitbit to wear, but someone else profits from their activity data being traded? 

Another issue is going to be accuracy, especially with health data that can be generated using wearable technology. Users are manipulating fitness trackers, as reported here. If you're a researcher buying access to aggregated data on Fitbit users, how accurate are the data? How representative will these data be of the general population? 

If we can trade our health data for economic returns, will this commoditization of our health data attract the attention of cybercriminals? 

What about Open Data? Some people argue that these new sources of health data should be donated into a commons, free for researchers to use for the benefit of humanity. 

What does this mean for you? 

Health data brokers - you need to be thinking about these trends, and how you adapt your company's strategy. If you don't, your future revenue streams are likely to suffer (or disappear!)

Healthcare providers & insurers - Are you ready for a world in which patients can choose who they want to share their health data with? 

Patients - Would you feel comfortable trading your health data for economic rewards? 

Pharmaceutical companies - How will this impact how you source data for clinical trials & observational studies? 

Startups - Immense opportunities (and pitfalls) ahead. If personal data marketplaces and patient data co-operatives take off, it could create a brand new industry. 

Policymakers & regulators - The world is definitely moving towards a personal data ecosystem where individuals can own, control and profit from their own data. Legislation needs to consider the rights of everyone involved with such a system. Will their be a special tax for those people who decide to sell their health data? 

[Disclosure: I have no commercial ties with any of the companies mentioned above]

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