Q&A with Anil Sethi, Founder, Ciitizen

Anil Sethi is the CEO of Ciitizen, a Silicon Valley startup helping patients collect, organize, and securely share all their digital health data—converting text narratives, into computable data.  acquired Sethi’s consumer Health Records company Gliimpse in 2016. Apple released its Health Records feature in 2018. Anil served as a Director of Apple Health until leaving in 2017 to take care of his little sister Tania, who died soon after from Metastatic Breast Cancer. Read his full bio.

Interview with Anil Sethi, Founder, Ciitizen

Q: Why do you believe patients need to take control of their health data?

A: I’ll give an example. In the last year of her life as a Stage IV Metastatic Breast Cancer patient, my little sister Tania visited 17 facilities around the US and was seen by 23 oncologists. Each facility thought they had her complete medical record. At best they each had 1/17th but only Tania had the complete picture. From a moral and ethical, plus a data governance and pragmatic standpoint, allowing the patient to be in control of collecting then sharing a longitudinal health history, makes the most sense.

Q: How does patient involvement advance research, drug discovery, and the healthcare industry?

A: Another example. The patient is the only medical participant who is outside of HIPAA. Researchers and physicians, institutions and payers, they are all Covered Entities with a limited ability to share information amongst them. The patient, she can give any authorizations to any research or clinical project, advancing the cause of drug discovery in a comprehensive and data complete way as compared to the current business of de-identifying patient records and selling data out the back door.

Q: Who are the winners and losers in this new model?

A: Health-Care is the winner. Healthcare is the loser. Specifically, clinical medicine will advance quite dramatically through leveraging data liquidity and sharing, through the patient. However, intermediaries always lose out when an industry becomes more efficient due to software enhanced work streams. Physicians will win along with their patients. Payers will win due to insights into what works and what doesn’t, as will researchers and the Pharma industry. For-profit providers and CRO’s will see a change in their business as technology continues to eat away at their profits by streamlining these businesses, connecting Pharma directly with patients.

Q: What is the problem that Ciitizen is trying to solve that couldn’t have been done in previous companies?

A: Historically, the patient has been the most underutilized resource in the industry of healthcare. This makes perverse sense. In a $3 trillion annualized US health spend, we debate if upwards of $1 trillion is waste. However, we need to remember that our waste is someone else’s wages and these companies will not simply give up $1 trillion of industry revenues. With the new GDPR and related data control movements towards patient data rights, only companies that subscribe to patient at the center will win. We named the company Ciitizen, for this reason.

Q: What could cause such efforts to fail?

A: In truth. Very little. The genie is out of the bottle in that wet chemistry together with computational biology are already delivering solutions we couldn’t have imagined even a decade ago. The US government is pushing towards consumerization in healthcare. Aging boomers are taking more control of their health information, sharing this directly with providers and researchers. The only fear I have is if EHR vendors or select hospital CIOs slow down the involvement of patients in the management of their own health, through the management of their own data. But, that ship is already sailed. It’s not a matter of if, but when.



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