A Silicon Valley-based startup formerly known as Ciitizen relaunched as Citizen Health on Tuesday — as well as announced a $14.5 million seed funding round led by Transformation Capital and a new partnership with the Chan Zuckerberg Initiative.
The company’s efforts began in 2017, when Ciitizen launched with the aim of giving patients better access to their health records. The startup was then acquired by Invitae in 2021 through a $325 million deal with the goal of allowing patients to access genetic testing and their health records in one place.
In December — two months before Invitae filed for bankruptcy — the company divested the Ciitizen platform. Invitae said that it transferred its assets to “a new entity established by the leadership team of the Ciitizen business and funded by a group of venture capital investors.”
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That new entity has now officially launched, and the overarching goal has remained the same: to empower patients with access to their complete health history.
Most of Ciitizen’s work focused on the oncology space, but the new startup is zeroing in on rare disease, noted Citizen Health CEO Farid Vij.
“Our focus now is: how do we help patients get access to all of their information? That means their medical records, genetic genomic information, imaging data and self-reported device data so we can paint a complete picture of a patient’s health — and then really leverage AI and community to be able to drive a more personalized experience for them. And where we’re starting is in rare disease,” he explained.
Vij pointed out that half a billion people worldwide are impacted by rare diseases — and 95% of these diseases don’t have a therapy. He also noted that patients and families often know more about the disease and how to navigate it than the doctor because the condition is so rare.
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The majority of rare disease patients are children, he added.
“It’s not only a patient that’s impacted — it’s the entire family. And a lot of these are pretty severe conditions — the average patient on our platform is seen by nine different providers concurrently. So your data is kind of scattered all over the place. You’re constantly going to the neurologist and the nutritionist and the occupational therapist, and they’re not all talking to one another, so it’s really difficult to have your entire story pulled together,” Vij stated.
Not only does Citizen Health pull together every patient’s individual journey, but it also allows them to share their journey with other patients on the platform.
By creating a platform to discuss shared experiences, Citizen Health gives its users an opportunity to connect with others and potentially learn more about which treatments are working and which aren’t, Vij remarked.
“On the other side, when you aggregate all of that information together, it is probably the richest source of data to drive research and drug development. The huge explosion we’re seeing in rare disease drug development proves that the traditional process doesn’t work well — because it’s really hard to find patients, and it’s really hard to get data around these rare populations,” he said.
By stratifying the data on Citizen Health’s platform into various patient cohorts, researchers can begin to understand the natural history of certain diseases and what symptoms look like across groups of patients, Vij pointed out.
As for the startup’s business model, Citizen Health does make money from sharing patient data, but users of the platform must provide explicit consent before any of their data is shared, he stated.
“We talk about this all the time — that our healthcare data is sold oftentimes without our knowledge. We don’t sell data. We allow patients to be able to share their data for research purposes and be able to drive who sees their data and for what purpose. Whenever there’s any commercial use of the data, that’s when Citizen makes money — and we actually take a percent of that and share it back with the patient, as well as a percent back with our nonprofit partners if they’re involved in that condition area,” Vij explained.
The nonprofit partners he mentioned are mainly organizations led by rare disease patients or their family caregivers that seek to provide support and resources for the impacted community, as well as advocate for better research.
When companies are transparent with patients about the way their data is being used, patients will usually opt to share their data, Vij added. He said more than 98% of Citizen Health’s users share their data for research purposes.