By Benjamin Ross

July 8, 2020 | When Marisa Zeppieri-Caruana was diagnosed with lupus in 2008, she spent weeks poring through the scientific literature looking for answers to her questions. What would the diagnosis mean for her life? Were there any trials available for lupus treatment? What she found was one book on the subject full of complex medical jargon.

“[The book] told me what lupus was and how it affected the body,” Zeppieri-Caruana tells Clinical Research News. “But I needed to know how I was going to live everyday with this because it really did affect everything in my life, from my schooling to my relationships.”

Frustrated and looking for real answers, Zeppieri-Caruana decided to channel her anxieties as she began her journey with lupus by starting a blog.

Fast forward ten years, and Zeppieri-Caruana—known online as “LupusChick”—is one of the many entities on the internet described as “patient influencers,” a growing trend in the patient advocacy space. Today, the LupusChick blog reaches half a million people a month.

The role of the patient influencer is two-fold. First, they create an environment where patients can interact with both the patient influencer and with one another on a personal level. Zeppieri-Caruana says this has become an integral part of the LupusChick brand.

“We tend to lean more toward other patients’ points of view and asking them questions versus going and looking for these very large, non-profit organizations,” she said. “I think there’s a trust level there, and it’s also very hard to make that personal connection with larger organizations, whereas when it’s a person, you can message them and instantly make that connection.”

Second, the patient influencer serves as a conduit between the patient and the researcher. Zeppieri-Caruana has done a lot of work with companies that run clinical trials, speaking to their researchers working on a lupus treatment who want to hear a patient’s perspective.

“I’ve met some of these researchers who are doing incredible things in that area and they’re looking for ways to help patients with lupus, and I’ve had several of them tell me that I’m one of the first patients they’ve been able to talk to and ask questions to,” she said. “For me that was really eye-opening because your whole life is devoted to creating medicine for someone like me, so wouldn’t the best thing be to know what we struggle with on a daily basis so you can meet that pain point?”

Zeppieri-Caruana has consulted these researchers in the way they reach patients and the language they use and how best to reach patients so they’re actually listening and open to listening about clinical trials and how those trials might impact someone’s life on a daily basis and what would make patients more open to applying for a clinical trial.

Zeppieri-Caruana says that, while there’s still room for improvement, researchers have been making efforts to assist patients, making it easier to find information for clinical trials happening right now.

“Rather than maybe a physician mentioning it to you and having a pamphlet, now you’re able to access these amazing websites that are intuitive and engaging, and they tell you everything from how much time it will take out of your week to what it’s going to be like when you’re at the hospital receiving the medication,” she said. “They give you so much more information so that you can really make an informed decision, and I think they’ve done the research on their end as far as working with other patients and finding how best to approach this language-wise and what they can offer in addition to the medication to make it feasible for someone to participate in a trial.”

Zeppieri-Caruana says efforts like this pull back the curtain of inaccessibility patients feel when they think of clinical trials.

“I think at one point it felt that only a select group of people got into these clinical trials and you didn’t really understand how they got in or how you could participate or if you matched the criteria,” she said. “It felt like it was a small club that you weren’t a part of and couldn’t get into, but today it feels much more open and that everyone can participate if you meet the criteria.”