Connecting with AYAs

Influencers Advocates Offer Key Support and May Help Improve Cancer Outcomes

Cancer patients in the adolescent and young adult (AYA) age group – generally defined as people between the ages of 15 and 39 – face a variety of unique challenges, from navigating a healthcare system that is not designed for them to financial toxicity and the reality of living with disease in the “prime” of their life. 

Among the many hurdles for both patients and providers is communication. This is often evident in seemingly routine aspects of the care process, such as medication adherence, where traditional methods of communication that may prove effective with older patients do not resonate or are not as impactful with AYAs.

In setting out to address this challenge, a team of researchers and clinicians learned that while the message was important, even more critical was the messenger.

There’s an app for that…but should there be?

The millennial generation and the generations that follow are often referred to as “digital natives,” as they were born or brought up during the age of digital technology and have been familiar with computers, smartphones, and the Internet from an early age as a result.

It was this premise that formed the foundation of an intervention focused on medication adherence led by a group of researchers and clinicians representing Children’s Hospital of Philadelphia, Northwestern University, and The University of Texas, MD Anderson Cancer Center.

The team received grants, including funding from the Teen Cancer America Young Investigator Award, to develop a new mobile app to help patients with their adherence to oral chemotherapy medication in the maintenance phase of leukemia and lymphoma treatment.

But as the researchers began interviewing AYAs and their caregivers for the study, they were met with responses such as, “That sounds great, but have you heard of this thing called TikTok?” and “What if you had videos from other patients telling us what worked for them to help us in taking our medication?”

Met with the realization that perhaps their target demographic was already active and engaged online elsewhere, the team did what any good group of researchers do when faced with a challenge – they changed the plan.

“It sort of opened my eyes,” Alexandra Psihogios, PhD, told Breaking Cancer News.  Psihogios, the lead author of the study and then a psychologist at the Children’s Hospital of Philadelphia, now serves as Assistant Professor in the Department of Medical Social Sciences at Northwestern University, Feinberg School of Medicine.  

“We use an approach to intervention development called human-centered design. And that’s really where your ideas and solutions are meant to come from the ground up, from the community, and not just from researchers telling individuals what they want or need,” she said.

“So, I was struck by these comments about TikTok, and started to think that maybe this doesn’t need to be hyper-produced. Maybe we just ask patients to create TikTok videos and disseminate those and maybe other patients will actually watch them. Too often, what we do in the hospital is hyper-produced – it can be pretty boring and not as patient-centric.”

Fortunately, the organizations providing grant funding for the study were supportive of pivoting to a new platform, reiterating their desire to back whatever reaches and helps patients.

The Pivot

The team transitioned to platforms like TikTok and Instagram and began connecting with patients with whom they had previous contact through various studies. These patients in turn contacted friends and acquittances within the AYA community to assemble a focus group of sorts, in which the concept could be explored.

In these meetings, the team was instantly struck by how much content some AYAs were already producing and the number of followers they had amassed by connecting on key issues related to cancer.

“As we’re meeting, and I’m talking to these patients, they’re telling me that they create cancer content on TikTok all the time,” said Psihogios. “We would look up their accounts, and they would have 20,000, 30,000, or even 50,000 followers.”

In these conversations, most of the AYAs who were active on social media shared with Psihogios and her colleagues that they began producing content because they felt as though nothing existed for them. Rather, the available information was tailored to older or much younger patients, a common complaint and challenge among AYAs.

These conversations confirmed that the change in approach was the right move. It was also immediately clear that the key to an effective social media strategy was people. Specifically, influencers. But don’t call them that.

The Anti-Influencers

One such anti-influencer is Chelsey Gomez.

To be clear, Gomez has no beef with influencers, that’s just not how she views herself. She prefers the term “advocate,” and after talking with her, it’s easy to see why.

Gomez is an artist who uses the moniker, “Ohyouresotough” and a co-author of the study. With more than 32,000 Instagram followers, she has an active online presence and a significant following.   

In 2018, Gomez was busy parenting a toddler when she was diagnosed with Hodgkin’s Lymphoma.

“After going through chemo, I did what many people do – I tried to put cancer behind me and return to my normal life. I pretended like it never happened,” she told Breaking Cancer News. “And then, about 2 months later, I relapsed, and then in 2020 I had my stem cell transplant right as the COVID lockdown was beginning.”

For Gomez, her cancer experience proved to be a turning point.

“It changed my entire life. I wasn’t happy doing what I was doing before, and I started turning to art as a way to cope with cancer and everything I had gone through and I started sharing it online, thinking that it might help somebody out there who might be feeling similarly.”

Gomez’s work caught the attention of Psihogios and her team and they asked her to join the effort, along with other “digital cancer advocates.”

Gomez and her fellow advocates produced posts and other content, including TikTok videos that were co-created with the research team; some funny, some inspirational or informative. But most importantly, they wanted to connect with the patients.

“The content was just meant to help patients learn something and feel supported with taking their medication,” said Psihogios.

With a fresh new approach, the team – which now included advocates as well as researchers – began a focused effort, vigorously targeting oral chemotherapy adherence during maintenance treatment for leukemia and lymphoma.

A Powerful Partnership

According to Psihogios, the importance of the advocates’ role on the team cannot be overemphasized. They are considered co-researchers, and the team meets monthly to help guide the research agenda. The advocates are also paid for their involvement and contributions, such as content creation, and they are co-authors on all publications and co-presenters at conferences and events.

“Our research team brings expertise in our respective areas and knowledge related to adherence,” said Psihogios. “But I want to emphasize how important the patients are to this work, bringing their voice and their perspective, along with their creativity. It’s their creativity and their flair that’s connecting with AYAs and helping us answer the question, ‘can messages like this conceivably impact health behaviors?’”

For her part, Gomez agrees.

“I’m very grateful that the researchers have the level of trust to bring us in, which is what’s so big about this study,” she said. “We are treated like equals in the study – we have decision making power and input.”

Just the Beginning

Through their study, the team sought to offer commentary on “how forming partnerships with social media influencers offers a novel strategy for supporting cancer care delivery, with the potential for equitably improving AYA cancer outcomes across the cancer continuum.”

It’s clear that they have achieved this goal, but they’re not done yet.

The team is currently working to measure the impact of the initiative through surveys and other forms of data collection in order to gauge how effective they were in key areas such as pre-medication knowledge and adherence, as well as how socially supported the AYAs they interacted with feel.

Psihogios says they are thinking “big picture” and working on other efforts to build on their work and secure more grant funding that ensures they can continue to work with advocates like Gomez.

“Looking at, ‘how do we disseminate these things and measure at the population level impact?’ – that’s really important,” said Psihogios.  

In response to feedback from the advocates, the team is also evaluating a project focused on mental health – something that Psihogios says is a priority for the AYAs she works with and their followers.

“Their followers follow them because it provides a place for connection and support. So, we’re looking at what ways we can distribute credible mental health information together to really reach AYAs and help them access mental health treatment.”