Behind every statistic is a patient, a family, a moment when being able to access health data — or not — changed everything. These are those stories.
Our dad had been on a steady, manageable treatment plan for his cancer. He had undergone surgery to remove a colorectal tumor, followed by an ileostomy. When his surgeon, the amazing Dr. Shah, went to reverse the ileostomy, he discovered that the cancer had spread to his peritoneum. He was able to remove two small tumors and referred us back to oncology for further treatment.
Our dad's wonderful oncologist restarted him on chemo — but soon after, told us he would be retiring. His care was transferred to a new oncologist.
During this time, dad wanted to take a trip back home to the Dominican Republic — to see family, to live life. His new oncologist agreed to adjust his treatment so he could travel. She removed two of the three chemo drugs and sent him with a three-month supply of an oral medication.
But there was no real plan to monitor him. No clear communication about risks. No warning signs to watch for. And no "what if" instructions.
After a couple of weeks in the Dominican Republic, my father began experiencing GI issues — vomiting, nausea. We called his oncologist here in the U.S. She advised us to get a CT scan and send her the results. We did everything we could. The oncologist in the Dominican Republic tried multiple times to send the images — but the U.S. oncologist's office kept saying they never arrived.
But his symptoms worsened. A GI specialist eventually advised us to bring my father back to the U.S. for care. The very next day after returning, he had a CT scan and was seen in person. During the physical exam, the oncologist could now feel the tumors growing in his small intestine.
It was too late.
The tumors had grown so aggressively that they blocked his small intestine. He couldn't eat. He couldn't keep anything down. This is what ultimately led to his decline — the turn that sent him down the path to death.
This is why data ownership, transparency, and secure exchange matters. Because when the system breaks down, it's the patient and their family who pay the price.
And we will fight for a future where no other family must wonder if better data flow could have saved their loved one.
— Natacha Fernández, Founder, I ♥ Data
Our father's story is one of thousands. Here's what the research shows about what's at stake.
Shared by real patients and families. Names and details may be changed to protect privacy where requested.
Whether your experience was a crisis, a breakthrough, or something in between — sharing it helps others know they're not alone.
Share your storyEvery patient deserves to understand the data that shapes their care — before they need it most.