Editor’s Note: Born with a passion for both art and science, Gilles Frydman, co-founder of Smart Patients and the artist behind the beautiful portraiture on Lilly TrialGuide's Cancer Research site, recently sat down with us to share his views on art and advocacy.
Gilles has a degree in animal biology, but some of his colleagues remember him more for his drawings than for his research. Early in his career, encouraged by teachers and friends, Gilles pursued his interest, stepping away from science to become a full-time artist. Then, shortly after he was married, his wife got very sick, requiring open heart surgery and later receiving a cancer diagnosis. Necessity led him to advocacy that he remains a part of today. With the budding internet at his fingertips and an interest in technology, Gilles jumped into online communities to seek information from others who were going through similar experiences. He found so much value in this medium that he decided to help grow the reach of online communities so that others could benefit from the same connections that had helped him and his now former wife (who, says Gilles, thanks to good medicine and care, recovered from her illness and is currently in good health).
Over the years, Gilles created over 200 online patient communities that serve more than a million people. During this time he wasn't thinking about art but was simply focused on helping patients. Coming from a science background, he appreciated the value of good scientific evidence, but he also began to realize the value of the patient perspective in enhancing and improving research. As the patient voice grew and gained prominence in health care conversations, he reignited his passion for art and placed patient portraits at the forefront of the redesign to his company website.
During our brief conversation with Gilles, his passion for making these portraits meaningful shone through. Among the many things these images offer is a means to humanize medicine—a way to show medical professionals the life that a disease may impact: "The point of these images is to show patients as people. You wouldn't know that this one had cancer or this one had Parkinson's disease, and that’s important to see. We have to figure out how to integrate treatment and care into the everyday lives of these people who happen to also be patients. You can see their story in their eyes." An image truly can be worth a thousand words.
Images tell a story and spark conversations
One challenge Lilly faces is finding the right imagery to help us tell our story. Showing what clinical research looks like, sharing the difficulties and challenges of drug development, and imaging what research may look like in the future—these images don’t exist in stock photography libraries. Real life cannot be staged, but photographing researchers at work in their messy and complicated lives can humanize the process and spark conversations that can change the way that we all work together.
Click to hear Gilles in his own words.
Gilles points out that industry has typically avoided these types of conversations, but culture change takes time. In an effort to really move toward true patient engagement, difficult conversations must be embraced. There are times when words might not be the most effective way to share a concept, but the right image can change the conversation.
The stories told through art are strong and enduring. Gilles shared a story of contacting a person that he wanted to include on our site—a very sick young woman and passionate advocate that he had photographed in the past, but she didn't respond to his request. "I later learned", Gilles said, "that she had lost her life, and that is hard. But her story lived on through images I had taken." He went on to say, "It's always in the back of my mind with helping communities of people who are sick, I have lost so many friends. I know things about these people I photograph, personal and amazing things about them and the work they're doing to help their communities. I wish more people knew their stories. These are powerful agents of change, more powerful than hospitals or anyone in influencing change, and I want to highlight their stories."
As we strive to share the importance of clinical trial participation with more people, we know that perception is influential. If someone perceives clinical trial participation as an option that other people like them have done, then they might be more likely to try it. Gilles believes that images can help to move us there. "It has been a disservice to minority populations that we haven't included more people," Gilles said. "You can see the strength of their character when you are talking to people. African American women, and cultural issues that they have had to face as a culture for decades before. It won't be the doctor that moves them to action—they will move one another to action. When you see these images you get to walk in their story—a mother and daughter caring for one another. You see the love and strength and hope and determination shown in just one image. To see them willing to put their faces on a pharmaceutical industry website takes courage."
Click to hear Gilles in his own words.
One example of Gilles’ photography.
To see more, visit the Lilly
TrialGuide cancer site.
The value of partnership
We asked Gilles what he got out of partnering with groups like Lilly to share his work. In addition to his fondness for getting to know people and having the privilege to share their stories through his art, he is truly happy to have the support of Lilly. For centuries, artists have sought out sponsors to support their work as their livelihood and Gilles says, "It's truly exciting for a corporation to respect and value my work. Artists cannot create unless they have a sponsor. As the ‘art virus’ resurfaced in my life, I wanted to become a full-time artist, and in order to do that I needed to find a way to sustain my craft."
Gilles hopes that his portraits are a tiny step forward to on the path to humanizing medicine: "We need to develop partnerships between patients and doctors and I'm hoping that this imagery and these online communities can build bridges and help us to move toward this."
We believe that using these images of real people in real life situations, both patients, clinicians and researchers, is a way that we, too, can contribute to this important goal.
We would like to thank Gilles for taking the time to share his story with us. To see some of the work that he has done for Lilly, visit Lilly TrialGuide’s Cancer Research site.