Ciitizen is building a system that patients can use to obtain and share their medical records. Anil Sethi founded the company after helping a sister who was diagnosed with metastatic breast cancer to carry all her records between visits.Photo Credit: Citizen
Many cancer patients still carry piles of paper records and CDs with imaging. Although the company is working hard to solve this problem, there are still some challenges.
Anil Sethi learned this directly after his sister Tanya was diagnosed with stage IV breast cancer.
He founded the previous startup Gliimpse, with the goal of helping her after she was diagnosed for the first time. The company was later acquired by Apple, where Sethi served as the head of health records for two years until he received a call from Johns Hopkins University stating that Tanya could only live another two weeks.
When they were looking for experts who could help, he left and drove with her across the country.
“We gave Tanya another five months of life when we were looking for hail all over the country,” he said.
When she died, Sisi promised that he would spend the rest of his career to ensure that people would no longer treat breast cancer as a death sentence. To this end, he founded the current startup Ciitizen in 2017.
If his previous cooperation with Apple was to make it easier for many people to obtain health records from different institutions, then Ciitizen’s current approach is in-depth. Although the company does not specifically serve cancer patients, considering the large amount of information they must manage, Sethi focuses on getting the platform to serve them first.
Many health records efforts are focused on extracting information using Fast Healthcare Interoperability Resources (FHIR), an interoperability standard that allows them to extract certain healthcare information from the health record system with patient consent . But the standard does not currently cover everything, including pathology reports, information about tumor size and grade, and the discharge summary that Tanya needs.
“The API cannot be extracted from the database…it was not in the database in the first place,” he said.
Since many built-in EMR databases are still billing-centric, there is no such information at all.
Instead, his solution is to use the patient’s access rights to extract all their records, files, and genomics reports. Its users can tell the company where they receive care so that Ciitizen can track the “breadcrumbs.”
“When Tanya was at Hopkins University, they used Epic, so I used her login, and I got 30 or 40, maybe 50 records, fault, no problem,” he said. “However, when I used her HIPAA access to fill out the form, sign it, and send it to the medical record, we got a dump of 2,200 pages. Therefore, we are studying two orders of magnitude difference.”
Of course, this requires a trade-off. Although the information obtained through the API is calculable, the 2,200 pages he received were all sent in a large and messy PDF format.
Therefore, Ciitizen is training machine learning tools and turning them into standardized, usable information. It focuses on capturing and coding the 20 most important elements needed by oncologists.
The service is free for patients. It has a feature to help them determine which clinical trials they may be eligible to participate in, and allows them to share their data with researchers (if they wish). Users can download their records or request their records to be deleted.
“I think we all have a Tanya in our lives,” Sethi said. “You have to know why you are doing this work. It’s really hard work.”
