After his sister’s death, tech entrepreneur works to help patients communicate their health history

A Silicon Valley entrepreneur has taken on a bureaucratic nightmare the very sick have found themselves in when trying to get help — the nightmare of communicating their health history from one doctor to the next, one medical center to the next.

Entering the headquarters of Anil Sethi’s Silicon Valley startup, a painting of a free-spirited woman is in the place where a corporate logo might otherwise loom large. The artist depicted one person: His little sister, Tania.

“Tania was always more spirit than flesh,” Sethi told CBS News’ Dana Jacobson.

When she was 46 years old, doctors at the Johns Hopkins Medical Center gave Tania two weeks to live.

“She always thought she could beat this. She tried a bunch of different kinds of therapies,” Sethi said.

Sethi joined Tania on her journey to fight end-stage metastatic breast cancer. He brought support and thought his knowledge of the health care system would be a plus.

“I’ve been doing what I do now for a little over three decades, and what I do is electronic health records,” said Sethi.

He took a leave from Apple, which had recently acquired his health care company. It was during this time he noticed some things in how medical information was shared.

“While I was following her around during her treatment in that last year, she was seen at a ton of places, and that means she left a breadcrumb trail of her medical information behind her wherever she went. And it just is fragmented,” Sethi recalled.

“Health care is still using a lot of fax and pagers, and this is the 21st century,” said Sethi.

Disparate medical-record keeping in the 21st century was a gut punch Lynette McMahon didn’t need either. She was diagnosed with cholangiocarcinoma, which is bile duct cancer.

Chemotherapy had helped, but she wanted to be in a clinical trial matched to her and her disease — something Sethi also wanted for his sister.

“I was sitting in her hospital room at Hopkins, and I’m furiously going through all the clinical trial websites that are out there but I can’t find anything. The organization isn’t meant to be searched,” he said.

If there was anything to save his sister, he couldn’t find it. Tania would lose her battle to cancer.

“She was telling me, ‘Well, what are you going to do?’ And I said, ‘What do you mean?’ She goes, after I die. And I said, ‘Look, I don’t know.’ And she said, ‘Well, here’s what you’re not going to, you’re not going to retire, and you’re not going to take a sabbatical, and you’re not going to go to the beach.’ And I said, ‘Yes, ma’am.’ And I know that was the initial motivation for Tania to push me to do this work,” Sethi said.

His sister’s last wish was for him to use his experience to help everyday citizens cut through a bogged-down medical bureaucracy. He founded a company, and named it Ciitizen.

It’s an online system for patients to upload and digitally house their medical records. The service is free to all patients.

McMahon was an early adapter, with results.

“I was getting ready to go back on chemo, and just at that time, Ciitizen sent me an email, said, by the way, we were looking over your data. Here’s some clinical trials we think you’d be interested in,'” McMahon said. A week later, she started treatment, “and it’s because Ciitizen sent me that information.”

Ciitizen is now in it’s third year, and Sethi is fueled by an unrepeatable motto under the painting of his sister to get back at cancer. Cancer patients are the starting point, but he is determined to give all citizens, sick or not, their own special place for their medical records, and match those who are sick to trials.

“When Tania died, I saw what happened in her medical records. And all the good stuff is in the clinical notes. And that isn’t available. And I know how to get that. So a lot of jigsaw puzzle pieces fell together, and it just made sense,” Sethi said.