Nadine Zemon can be described as a natural explorer, someone who has sought out new insights and experiences throughout her life. She now brings that relentless curiosity to PCORnet in her role as the newest patient representative on the PCORnet Steering Committee. Never one to be boxed into a single interest area, Nadine spent her younger years exploring dual passions: art and medicine. She has worked as a pediatric emergency room nurse, managed an employee health unit and, with an interest in integrative medicine, practiced massage therapy that incorporated guided imagery techniques of psychosynthesis. Her longtime interest in art led to an appreciation for the value of the arts in medicine and to becoming a graphic designer later in life. Now, Nadine is using her voice on the Committee to infuse the patient perspective into PCORnet-enabled work. Here’s her perspective on this role and why it matters:

What sparked your interest in clinical research?

My mother died of rheumatic heart disease when I was a teenager, which was made all the more tragic because of the fact that she suffered greatly due to a lack of available treatments. As time went on and cardiac care evolved, I marveled at how much more we know now versus then. It made a strong imprint on me about the power of clinical research. My mother’s quality of life could have been completely different if she had experienced her disease today as opposed to 50 years ago. How much more can we help patients 50 years from today?

How did you get involved in clinical research?

I heard about patient-centered research from a friend who was forming the first Citizen Scientists group at the University of Florida. I learned the program was recruiting patients to be involved with the Translational Science program, and I decided to sign up. At the time, the concept of patients having a seat at the research table was so novel, and yet it also made so much sense. I was excited to take part.

What excites you about PCORnet?

The whole idea of patient-centered research excites me. This notion that we should have symbiotic relationships between patients, providers, and researchers feels like it could be a pathway to a whole new era of therapeutic development—one that transforms the “old school” way of conducting research in the best way possible.

How has your role changed as a patient representative in clinical research?

When I first started participating in research, I often doubted my instincts. For example, I might think I was the only one who didn’t understand something, so I wouldn’t speak up. Over time, I’ve learned that if I don’t understand it, most other patients probably won’t either. My voice has become much stronger, and as part of the PCORnet Steering Committee, the patient representatives have actually formalized the process of identifying confusing topics and presenting them to the other Committee members. After each weekly Steering Committee meeting, the patient representatives meet to list areas where we—and the patient community at large—will need more clarity. The Committee is always receptive to this feedback. It is a big part of the value we bring and why we are here!

How do you see the PCORnet Steering Committee evolving in the coming years? 

Now that we patient representatives have found our footing on the Steering Committee, we want to find better ways to communicate with other current or prospective patient reps. We are launching a pilot project to connect with patient partners at Clinical Research Networks to open the communication channels. We want to know their thoughts on PCORnet and the Steering Committee, and we also want to share ways they can get involved in research. Our hope is that by starting these conversations, we can engage with new ideas and maybe even inspire the influential patient representatives of the future.

What would you like other patients looking to engage in research to know? 

We need your voice in research, and there are so many ways to get involved. Also, you don’t have to have a medical degree to be an effective patient representative; you just have to be willing to share you perspective toward the betterment of research.

If you are looking for a reason to get excited about the promise of PCORnet®, the National Patient-Centered Clinical Research Network, look no further than Henry Cruz. He’ll give you 10, and you’ll leave your encounter with him energized and in awe of a guy who grew up the youngest of 12 kids in a low-income community in Brooklyn and now lives in Harlem where he works to bring better community and patient engagement to clinical research. Henry serves as a powerful patient advocate for bringing communities into the research fold. From delivering keynote speeches across Asia and Africa to co-authoring a peer-reviewed article on patient engagement for the American Heart Association, Henry’s life is a lesson in how a single voice can amplify a movement, build a coalition, and make a meaningful difference in the way patients and researchers engage. Now, he’s joined PCORnet’s Steering Committee as one of three patient representatives. Here’s his perspective on his role and why it matters:

What inspired you to take on an active role in clinical research?

I am the youngest of 12 children, and we all have diabetes. Today, there are only three of us alive. Watching our family be impacted over and over again by the same disease made me realize that as patients, we cannot sit back and wait for the answers to come. We have valuable insights that, when paired with research expertise, can move the needle on chronic conditions like diabetes faster than the research community can alone. I began working closely with physicians at Montefiore Medical Center to manage my diabetes and with innovative researchers who restored sight in my left eye. It was this exposure to researchers where I developed respect for the value and impact of clinical research and those who work in this field.

How did you come to partner with the PCORnet Community? 

After consulting as a patient representative for Sanofi, Norvo Nordisk, and others for more than 20 years, my partnership with INSIGHT (formerly the New York City Clinical Data Research Network) connected me to the PCORnet Study, ADAPTABLE. I was amazed. The study team was taking a totally new approach to engage a team of patients as partners, empowering them to give input across the study lifecycle. I had previously served on other studies as a patient representative, but for the first time in my life, I played a central and active role in the research process. I was not only invited to the table as a collaborator, but my ideas and opinions were respected—and sometimes helpful!

Because of ADAPTABLE, my worldview on the patient’s role in research changed profoundly. It has been one of the most amazing health experiences of my life, and I became vocal about my passion for helping to implement this approach more widely across research. Fortunately for me, the stakeholders driving PCORnet are passionate about it, too. When they asked me to join the Steering Committee as a patient representative, I didn’t hesitate. It was an immediate “yes.”

What excites you about PCORnet? 

In my life, I have come across many, many organizations that advocate the value of “patient-centered research.” The problem is, it was no more than that—a phrase, a thing to say, but not a practice. But that’s not the case within the PCORnet community, which is clear across literally every stakeholder I’ve encountered. PCORnet is a community of people who see patients as partners. At our Steering Committee meetings, I joke that I’m from Brooklyn living in Harlem sitting around a bunch of academic nerds. But that’s what makes PCORnet so groundbreaking! They are changing the way the clinical research community sees patients. They are changing the way we see ourselves. I am humbled to collaborate with these people.

Watching the infrastructure of PCORnet grow excites me nearly as much as the people. I think of the Network as train tracks, crisscrossing the United States and connecting hundreds of learning institutions. It hasn’t been done before now, and it is changing the way research is conducted. Everyone knows we need to find ways to make research faster and less expensive. With PCORnet, we are making it happen, and that is tremendously exciting.

How does your perspective add value to the research process? 

The clinical research community is filled with incredibly bright people, but the lived experience of a disease or condition is something that can’t be taught in textbooks. Patients need researchers, and researchers need patients. It’s a partnership. I remember a big moment during one of the first studies I consulted on, a pulmonary trial being conducted through New York University. I went to meet with the principal investigator, who let me know right away that he was meeting with me as a “patient input” requirement of the study. But I’m not shy, so I held my ground, asked questions, and challenged the areas of the protocol I felt merited a second look. As the meeting ended, the investigator slammed his binder closed and said, “You have completely undone our research.” Then, after a beat, he smiled. “But I’m glad. You’ve made it better.”

Since that time, PCORnet and other patient-centered resources have gone a long way toward proving the usefulness of the patient voice across the research community, but this anecdote is still an important reminder to me of the true value of community collaboration. Patients look at a protocol from a different perspective than a researcher, and we can spark ideas and insights that matter. As a patient, this is incredibly validating. Working as a patient partner has unlocked opportunities to put the advocacy I’ve championed for decades into action. It’s next level, and very exciting.

What would you like other patients looking to engage in research to know? 

Don’t be intimidated, and don’t sell your lived experience short. Research needs you, and now, thanks to communities like PCORnet, there is a place for you here. Reach out and learn how you can get involved.

This is part one of a three-part series highlighting patient partners on PCORnet’s Steering Committee. Be on the lookout for future Q&As featuring Neely Williams and Kiely Law.