The new category, Human Lens: The Lived Experience, is a category that elevates authentic human experiences, honoring work that is rooted in authentic patient, caregiver, and community experiences. This new category will celebrate storytelling that gives voice to real lives, challenges stereotypes, and fosters empathy, understanding, and connection.

In this series of the Health Pulse, we will get the inside scoop on what strikes a chord with members of our Specialty Jury for this inaugural year. 

For more than three decades, Elyse Spatz Caplan has helped organizations understand what it means to put patients at the heart of their work. After a cancer diagnosis changed the course of her own life, she changed careers, moving into oncology patient advocacy and engagement. Her work has been shaped by a simple conviction: lived experience belongs in the conversation from the beginning.

Elyse’s goal is to make sure patient voices help shape the decisions that affect their lives. Across a comprehensive cancer center, a national breast cancer nonprofit, and the biopharmaceutical industry, she has brought personal insight and strategic vision to campaigns, resources, and business strategy in oncology and rare disease. A trusted thought partner and connector, she keeps patients and caregivers in focus, from research through care and beyond.

NYFH Awards: Why did you say yes to judging this category specifically?
Elyse Spatz Caplan: I said yes because the Human Lens brings together my whole career—healthcare institutions, nonprofit patient advocacy, pharma and biopharma. I've been on every side of this fence: representing patients, caregivers, and families, and working with healthcare providers, agencies and industry.

It's personal, too. When I was diagnosed with breast cancer in 1991, nobody talked about lived experience or quality of life—it was, here's the treatment, don't you want to live? That became the pivot of my career. I wanted to make things better for the people who came after me. This category is current, and it's how we improve the work we do.

NYFH Awards: Why is the Human Lens category important right now?
Elyse Spatz Caplan: Storytelling is everywhere in healthcare, but it only works if it's authentic—and a lot of organizations think they're already doing that without realizing they're not doing it the way patients actually experience it. Too often, a team signs off on a concept, an agency starts drafting, they hit a snag, and then someone says, let's consult a patient/advocate. Patients and caregivers are the subject-matter experts—they belong in the project while the idea is being shaped, not called in midstream to fix something. If you speak with patients they will tell you first-hand, “nothing about us; without us.”

Midstream can still work if the team is open to feedback and has built in time to act on it—otherwise, it's inefficient and disrespects the people who gave their time and input. The Human Lens shows what happens when lived experience is embedded from the start, not added at the end to validate a decision already made.

NYFH Awards: Have you worked on something where a patient or caregiver changed an actual decision?
Elyse Spatz Caplan: Yes. I worked on a clinical trial campaign built to reach Black, Hispanic, Asian American, and Native American communities. The promotional flyer used a very well known, iconic piece of artwork as its central image—and the figure in it is a white woman. We were trying to reach communities of color, and the one image everyone would see first didn't reflect any of them.

My feedback: make individual tailored versions of that same artwork reimagined and inclusive for the various communities we were actually trying to reach. The team agreed, and from that point forward we could distribute the updated versions where people saw themselves reflected in the materials. That's the point—it's not a diversity box to check, it's someone noticing, before the materials are developed and go out the door, that the audience must clearly see themselves.