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PHR Startup Ciitizen Sees Hope in Aggregating Genotype, Phenotype Data for Patients


CHICAGO – Personal health records have been a tough sell over the years.

To this day, not a single PHR brand has gained wide acceptance unless it is tightly linked to an institution's electronic health record. Among those failing have been widely hyped offerings from tech heavyweights like Google and Microsoft.

The founder of Palo Alto, California-based Ciitizen, a startup PHR vendor currently focused on aggregating genomic and phenotypic data for cancer patients, knows about this track record and is vowing to do things differently by focusing on adding context to unstructured information.

"We recognize that maybe 95 percent of all of the information behind [a healthcare organization's] firewall is unstructured," Ciitizen Founder and CEO Anil Sethi said.

This number comes from the experience of his sister, Tania, who died of metastatic breast cancer in 2017.

Sethi said that Tania received care at 17 different facilities — hospitals, clinics, laboratories, and pharmacies on both coasts, including six academic medical centers — before she died at a Johns Hopkins facility in Baltimore.

Sethi said that 93 percent of all the information about Tania in the electronic health records held by these various entities was behind a firewall and did not flow from provider to provider, despite the fact that the academic medical centers and a few other facilities had adopted the Fast Healthcare Interoperability Resources (FHIR) standard for data exchange.

Despite steady adoption of FHIR among large health systems in the US, UK, and Australia and the presence of an add-on for genomics, the standard still is somewhat new and is missing some data elements that cancer patients need, according to Sethi. FHIR also is not in wide use in much of the world.

While Sethi said that his company is a "big supporter of the FHIR standard," Ciitizen does not need to rely on it. "Anywhere in the world where healthcare professionals are using a computer system, they can, at a minimum, print to PDF. We accept this as input," Sethi said.

He likened this input to crude oil. "We run it through our data refinery to extract the valuable clinical elements needed for both oncology encounters and clinical research," he said, comparing Ciitizen to a petroleum company. 

He also compared the output from Ciitizen to currency. "All this data can be shared by patients for both clinical treatment on a n-of-1 basis, plus donated like a digital version of a blood donation, paying it forward and sharing information with researchers and others not directly benefiting the patient," Sethi said. "We put it into your bank account and you decide how you want to spend it."

From personal observations as a caregiver for his sister and in conversations with hundreds of Ciitizen users and their physicians, Sethi said that he found that there is a nearly universal need for patient-reported outcomes, genomic and imaging files, and medical records, and Ciitizen is able to process all of those reports.

The company is able to "shred" PDF versions of genomic reports and reassemble the files with standardized vocabularies and terminologies," according to Sethi. "A PDF from a genomic vendor, as a report sent to the patient, can be easily uploaded into our data refinery, which results in genotype and mutation data elements as part of the cancer summary," he said.

In the case of his sister, who did not have the benefit of such technology, "she was one of the only people who could aggregate and contextualize her information, including three genomic reports," Sethi said in an interview at this fall's American Medical Informatics Association (AMIA) conference in Washington, DC.

He was by his sister's side for the last 5 1/2 months of her life. "During that journey, I had come to understand that the kinds of discussions that we are having here [at AMIA] as informaticians and academics doesn't always necessarily translate to the patient," Sethi said. Academic progress is too slow for the needs of patients facing terminal conditions.

"What we discovered is the information that comes off of FHIR endpoints is not always clinically relevant," Sethi said.

Sethi found that much of the most important information in his sister's records while she was battling metastatic breast cancer was in the unstructured text of the "findings" section of pathology and imaging reports. "This is where Tania's clinically meaningful information was found," he said.

Genotypic data also needs to align with phenotypic data for PHRs to serve a useful purpose. "Otherwise, you have a key looking for a lock or a lock looking for a key," Sethi said.

While Tania was dying, Sethi made her a promise that he would dedicate his life to solving the data conundrum that plagued her healthcare. He founded Ciitizen two months after she passed.

The company closed a $17 million Series A round in January 2019, led by Andreessen Horowitz, a firm that also contributed a $3 million seed round in 2018. Google sister company Verily is among the investors in Ciitizen. Former Foundation Medicine CEO Michael Pellini is another investor and a board member.

Ciitizen also attracted longtime health data privacy expert and Washington insider Deven McGraw to serve as general counsel and chief regulatory officer. McGraw previously was deputy director of the Department of Health and Human Services' Office for Civil Rights, which enforces the HIPAA privacy and security rules.

This is Sethi's seventh startup, the sixth in healthcare. One failed. One went to an initial public offering. He sold his previous company, Gliimpse, maker of a more traditional PHR, to Apple in August 2016, and then joined that Silicon Valley giant as director of health technologies and health records.

Sethi took leave, personally approved by Apple COO Jeff Williams, to go from California to Maryland to help care for Tania in her final months. As a caregiver, he leaned on the Gliimpse data aggregation technology he had developed.

Two years after buying Gliimpse, Apple released an app called Health Records, incorporating much of the technology Sethi had developed. Health Records, like Gliimpse before it, concentrates on snapshots of structured data and specific points of time, as the Gliimpse name implied. Ciitizen is doing the opposite.

"Apple's interest is a gazillon people wide but an inch deep in data. Ciitizen is doing an inch wide, with cancer patients to start, but all of it, including genomics, imaging, and patient-reported outcomes," Sethi said.

With patient consent and login information for various hospital, physician practice, lab, and pharmacy portals, Ciitizen ingests all the data available, including pathology reports, discharge summaries, and progress notes, typically sent as noncomputable PDF files — essentially electronic paper. "That's where the juicy stuff is," Sethi said.

Ciitizen is trying to differentiate itself from other extraction systems by letting its machine-learning algorithms perform about 90 percent of the work and bringing in people to curate and verify the information, rather than having machines check manual work. "Humans don't scale," Sethi said.

The technology has been trained to read reports and clinical narratives and then abstract the top 20 "elements of interest that almost all oncologists want," Sethi said.

"After extracting clinically relevant information from unstructured clinical narrative, we construct a digital breadcrumb trail," Sethi explained. "It's not all the gory details, but enough to benefit patients and oncologists plus researchers to accelerate therapy and drug design and development."

The Ciitizen platform, which is still in private beta, recently passed 1,000 cancer patients using it in daily care, according to Sethi. Users must be invited, and the company has been working with advocacy groups and health systems to identify beta testers. Sethi said that the platform will be more widely available at some point in 2020.

Close to 450 health systems have consented to allow Ciitizen to retrieve documents from their information systems, Sethi said this week. That is more than double the number that were part of the network a month ago.

Right now, Ciitizen is focusing on cancer but able to support other areas of medicine, particularly those with genetic components. Sethi said that his company has plans to move into autoimmune diseases, lupus, and HIV once it has a handle on data for the hundreds of types of cancer, including rare ones.

The company does not own the data, but takes a transaction fee each time it moves data. This theoretically could be paid for by a patient, a healthcare provider, or an insurer, the latter two groups in the context of coordinated and accountable care, according to Sethi.

Health literacy also is an issue among many constituencies across all demographic groups, but Sethi dismissed the common argument that patients might not be savvy enough to understand their own health records, much less their genomic makeup.

"Nonsense. The patient [armed with this information] will be a better participant with providers and researchers alike. They will become part of their own care team because they know about missing information, out-of-context information, and are in the best position to request and release information under their HIPAA right of access," Sethi said.

Those with late-stage cancer have a particularly strong reason to get involved in their own care. "Imminent death is a strong motivator," Sethi said.

Sethi knows that he has a difficult road ahead, but he is optimistic. "I think patient sharing — BYOD, bring your own data — is a topic whose time has come," he said.

That has been a promise of PHRs for two decades or longer. Sethi said that the timing is more favorable now than when the since-discontinued Microsoft HealthVault and Google Health PHR products launched to much fanfare in 2007 and 2008, respectively.

"Apple, by example, timed market entry well with their consumer-oriented approach, specifically by being attentive to privacy and security," Sethi said. He said that consumer brands including Apple, Amazon, Walmart, CVS Health, major health insurers, and, yes, Microsoft and Google once again, see the window opening for a consumer-oriented health tech ecosystem."

"Will we fail? Could be," Sethi mused. "So far, so good."