Influencers: Their Power is Real When a Person has Cancer

Many people have social networks they cherish: Family and friends. A church community. Book clubs. Sports leagues. Colleagues at work and online groups. What happens with these networks when a person gets cancer?

It’s a question worth studying, according to Wilmot Cancer Institute researchers — because social networks influence the decisions of nearly every patient who walks into an oncologist’s office.

This is especially true for older adults, who comprise 60 percent of those with cancer. They tend to have more serious illnesses, and have complex relationships with the people in their support systems, said Supriya Mohile, MD, MS, the Philip and Marilyn Wehrheim professor of Medicine and co-leader of Wilmot’s Cancer Prevention and Control research program.

“We know that most people don’t just go and do whatever the doctor tells them,” Mohile said. “First, they’re likely going to talk to people, maybe a spouse, a sister, or a neighbor — and whether their information is right or wrong, technically and medically, it goes into every decision.” 

“As medical providers, we must understand that patients live in the context of social networks,” she said.

The National Cancer Institute invited Mohile and collaborators from Wilmot and the University of Rochester Medical Center to apply for a research grant and recently awarded the team $3.5 million. Mohile is a multiple-principal investigator with Ronald Epstein, MD, and Reza Yousefi-Nooraie, MSc, PhD.

They will study the ways that social networks impact how patients seek care for advanced care, and how networks change through the cancer journey.

What are Social Networks?

They include anyone in a person’s social circle, near or far, who offer a connection and have similar interests and values. These networks take health care beyond the walls of the medical clinic and exert profound influence, said Yousefi-Nooraie, an implementation scientist who specializes in social network analysis.

Is there an optimal network for cancer patients?

No, he said, adding that a patient’s personality and the people they trust often shape the network. The best networks empower a patient to be resilient.

For this study, investigators plan to enroll 300 local and regional individuals, ages 65 and older, with advanced cancer. Researchers will ask patients to reflect on who is important in their lives and who might influence their decisions.

Each patient will receive a mapping template to draw a graphic that displays their social networks. The patient will be in the middle as a bullseye, with supporters branching out from the center.

An earlier UR pilot study showed that everyone’s map was quite different but meaningful patterns developed in the way people connected and gained influencers. This included beliefs about whether a cancer is curable, even if the belief did not match with the medical prognosis.

“We also found that about 40 percent of patients decide to do additional cancer treatment only because family wants them to press on,” said Mohile, a geriatric oncologist. “I hear this in my clinic all the time.”

Yousefi-Nooraie noted that a person’s social circle can change over time, and the team will study those dynamics as it relates to cancer. Older patients also rely on their own wisdom and experiences and seem to communicate selectively within their social networks.

“For example, if the disease is progressing, maybe they don’t tell their children right away because it’s too sad. So, they may talk to their hairdresser or a friend,” Yousefi-Nooraie said.

During the network analysis, investigators also will track the patients’ medical records and what decisions they’ve made about treatment.

Despite the potential for misinformation from social networks, Yousefi-Nooraie emphasized that most networks are positive and provide critical support as a person navigates health challenges.

“If you ask me, everyone should do this mapping exercise once in a while in their own lives, whether you have cancer or not,” he said.

Elsewhere, researchers have studied social networks in the context of mental illness and stroke care, Mohile said, but the field is relatively new, and no one has focused comprehensively on older adults with cancer.

In earlier studies, featuring recorded interviews, Wilmot researchers gained insight into how doctors and patients discuss cancer with the goal of improving communication, particularly for health care providers. This project builds on that foundation, which was led by Epstein, a UR professor of Family Medicine and Oncology.

Additional Wilmot collaborators include Kah Poh (Melissa) Loh, BMedSci, MBBCh, BAO, MS, and Allison Magnuson, DO, both members of the Cancer Prevention and Control research team; Sally Norton, PhD, RN, senior associate dean for research at the UR School of Nursing; and Kimberly Van Orden, PhD, associate professor of Psychiatry at URMC. Working with investigators across the University is important and something that Wilmot has promoted, Mohile said, as it brings diverse skills and perspectives to research projects.