Many cancer patients still carry stacks of paper and CD records with pictures between visits. Although companies are working to solve this problem, several challenges remain.
Anil Sethi learned about this firsthand after her younger sister, Tanya, was diagnosed with stage IV breast cancer.
She created an earlier startup, Gliimpse, with the goal of helping her after she was first diagnosed. Later, Apple acquired the company, where Sethi worked for two years as director of health records, until he received a call from Johns Hopkins saying that Tanya would only have two more weeks to live.
He went and drove across the country with her while they searched for specialists who could help her.
“We bought Tanya five more months of life as we traversed the country trying to find hail,” he said.
When she died, Sethi promised that she would spend the rest of her career working to make sure that people no longer thought of breast cancer as a death sentence. He founded his current startup, Ciitizen, in 2017 with this goal in mind.
If his previous job with Apple was to make it easy for many people to bring medical records from different facilities, Ciitizen’s current focus is on depth. Although the company is not exclusively for cancer patients, Sethi is focused on making the platform work for them first, given the large amount of information they have to manage.
Many health records efforts focus on extracting information using Fast Healthcare Interoperability Resources (FHIR), an interoperability standard that allows them to extract certain health information from health record systems, with patient consent. But that standard currently doesn’t cover everything – including pathology reports, tumor size and grade information, and discharge summaries – that Tanya needed.
“An API cannot extract from a database … what it doesn’t have in the database in the first place,” he said.
Because many of the built-in EMR databases still focus on billing, this information was simply not there.
Instead, their solution is to use the patient’s right of access to extract all their genomic records, documents and reports. Your users can tell the company where they received the care so that Ciitizen can follow the “breadcrumbs.”
“When Tanya was at Hopkins, they used Epic, so I used her username and got 30 or 40, maybe 50 records, a breakdown, no problem,” he said. “But when I used his HIPAA right of access to put up a form, sign it, and send it to the medical records, we got a 2200-page dump. So we are looking at two different orders of magnitude. “
Of course, this comes with a trade-off. While the information obtained through an API is computable, those 2,200 pages you received were sent in a large, messy PDF.
Because of this, Ciitizen is training machine learning tools to turn this into standardized, usable information. It focuses on finding and coding the 20 most important items that oncologists would need.
The service is free for patients. It has a feature that helps them identify clinical trials for which they might be eligible and allows them to share their data with researchers, if they wish. Users can download their logs or request their deletion.
“I think we’ve all had a Tanya in our lives,” Sethi said. “You have to know why you are doing this job. It’s a very hard work “.