There are patients you remember for their diagnosis. And then there are patients you remember for who they were.
He was the second kind.
Years ago, during my time in oncology clinical research, I met a patient with multiple myeloma. At the time, I was working as a supervisor in a hematology-oncology clinical research unit at a large academic research institution, overseeing a team of study coordinators and managing assigned clinical trials. My role was to ensure everything ran as it should: protocols followed, timelines met, data accurately captured.
But he changed something in me. He didn’t have family. So when I explained the clinical trial to him, I didn’t just go through the consent and the process; I stayed. I came back to speak with him, to check in, to make sure he understood not just the trial, but that he wasn’t alone in it. I spoke with the nurses, aligning on what mattered most for his care in those moments.
Outside, it often felt gray. Heavy. Quiet. But inside his room, there was light.
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His photographs. They filled the space in a way no hospital setting ever could. Images from Europe: the soft rhythm of the streets in Paris, the openness of a piazza in Italy, the intricate beauty of Spanish architecture. Sitting there, surrounded by infusion pumps and monitors, I felt transported. Like I was walking those streets with him.
He would tell me about the culture, the places, the people, the life he had seen and captured through his lens. Even in that hospital room, he carried the world with him.
And then one day, he said something I have never forgotten. He told me, “I’ve spent my life seeing the world through my photography. Now, I hope others will see something through me.”
He understood what it meant to be part of a clinical trial. He knew that the data being collected (from him, and from many others) would one day be seen, analyzed, and used to help people he would never meet. But there was something deeply personal in the way he said it. He wasn’t just contributing data. He was offering a part of himself.
In clinical research, we are trained to focus on endpoints: response rates, safety profiles, progression-free survival. We follow strict protocols, document every detail, and move forward with precision. And all of that matters. But what we don’t capture, what no dataset will ever fully reflect, is the human being behind it all.
The life before the diagnosis. The identity that continues during treatment. The quiet courage it takes to say yes to something uncertain.
That experience shaped the way I see every patient I encounter in clinical trials. Because behind every protocol number is a person, someone who made a choice. Someone who stepped forward not only for themselves, but for others.
Sometimes, I think about him. About the way he brought light into a dim room. About how, even then, he was still showing the world, just in a different way.
Clinical trials advance medicine. But patients give them meaning. And this is why I’ve dedicated the past twenty years of my life to this work. Because of people like him.
Regina Portnoy is a clinical research professional.
