Cancer has killed people I love. My grandmother died from brain cancer, my grandfather from lung cancer. At the end of her life, my Nana stopped getting out of bed. She lived off English muffin packs kept in her nightstand. When she finally became so incoherent that her daughters and sons had to stop what they were doing and drive to Massachusetts to see what was wrong, they found her there, in bed, the empty sleeves of English muffins beside her on the floor.
My career in cancer research began with a volunteer position at Memorial Sloan Kettering Cancer Center. I took lunch orders for outpatients in the Bone Marrow Transplant service. I read the soups of the day from a neon Post-it Note, jotted down sandwich substitutions. Often, patients wouldn’t eat. “Just a little soup,” a husband would tell me, ordering for his silent wife, who sat slumped, strapped to an IV. I waited by the door while they decided between cream of tomato and chicken noodle, neither of which sounded good. “The tomato is really nice,” I said, having never tried it.
But I knew them — who to get warm blankets for, who liked ice in their drinks. I smiled because it felt like the right thing to do, but this work was viscerally painful. It was emotionally devastating to be around people who were so sick. It became important to me to be there, connect with them, listen. It was the most meaningful work I’d ever done, even if I was just handing out bagged lunches.
I took a full-time job there, assisting on clinical trials. Nana was never on a clinical trial: she was dead three weeks after everyone came to her bedside. It was only a few days after the biopsy confirmed glioblastoma that Nana pulled my mother in close, eyes flashing hurt, and said: Home. Home. Home.
To me, the most devastating work was also the most important.
Working in cancer research meant spending dozens of hours parsing medical records of the terminally ill. It’s the little, human things that break your heart; a data point becomes a person when you learn about their children, how they broke their tibia on a ski trip, their allergy to cantaloupe. How, at the end of your life, you just want to go home.
I loved working at MSKCC, despite how difficult it was, and I wanted to contribute more. A friend told me about a new oncology startup focused on learning from each data point, from every cancer patient’s full experience. I left MSKCC, where I knew a hundred patients, to go somewhere I could learn about thousands.
In my new role at Flatiron Health, I’m a clinical data analyst: I help organize a tangled stew of raw data into large, anonymized, structured datasets that can be used to inform research and patient care. Patients are anonymized, digitized. I don’t see their faces or know their names. I don’t know what kind of soup they like. But with more information, more data, I can participate in the pursuit of a greater understanding of what it takes to beat cancer more often.
Every story counts.
What we know about cancer treatment and care largely comes from clinical trials data collected by large institutions, like Memorial Sloan Kettering. Patients in these trials have access: they live near major cancer centers, can afford them, are able to get onto trials despite strict requirements. They make up just 3% of all people living with cancer today in the U.S.
Nana was among the 97% of people battling cancer without access to a clinical trial. She was seen at her local hospital. That’s where they told her there was nothing else they could do. It’s not enough to study only the healthy patients, or the ones with private insurance or ample leave time from work. We need to study the experiences of all cancer patients to know what’s been done before, what we can do better, and what we need to do next. What can we learn from my Nana’s three weeks?
For me, big data is still inexorably small, still specific. It’s my Nana. These are the stories we need to collect, honor, tell. These are people I have loved; people I love still. Each one of the hundreds of thousands in our database is an entire human life, and each of their stories deserves to be told. If we put them together, we can see a larger truth unfold- how cancer works in the real world. We will only learn to beat cancer more often by listening: to everyone.
Originally published at medium.com