Patients Turn to the Internet for Information, But Not Decision-Making

Oftentimes when people are diagnosed with cancer, they want as much information as possible, and they want it fast.

That’s why 89 percent of patients and caregivers look to the Internet for information after they or their loved ones are diagnosed, according to a recent study conducted by Healthline. In fact, nearly half (49 percent) of millennials reported seeking online guidance the same day that they are diagnosed.

“They’re eager to take it all in, but in the end, nearly half of them will rely solely on their doctors,” Ingrid Eberly, Healthline’s Vice President of Brand Marketing said at the company’s recent “State of Cancer” event, where a panel of guests discussed the results of the study.

The study included 1,500 participants, and found that 78 percent of people surveyed said that Internet use allowed them to make more informed decisions. However, when it came to actual decision-making, 48 percent of millennials relied exclusively on their health care team compared to only 38 percent of baby boomers.

As explained at the meeting, one possible and probable cause of this is that a cancer diagnosis might be the first health crisis that a millennial will face. In that time, they are likely to be overwhelmed and look to a trusting source. Half of millennials polled reported that the information they find online actually causes them to have an increase in anxiety and fear.

“This informs us how we need to talk to people, and it informs us how we need to offer information, support and guidance,” Eberly said.

While treatment decisions might not be derived by the Internet among millennials, this age is turning to the web for emotional support and to bond with people who were facing similar challenges. For example, millennials were three times more likely than baby boomers to join online support groups.

But for some people, even that was hard to come by.

Ericka Hart, M. Ed, a writer, activist, sexuality educator and meeting panelist, was diagnosed with breast cancer at the age 28 ¾ 15 years after her mother died of the disease.

“I thought it was weird when doctors said that I was young, when breast cancer — or any cancer, really – can happen at any age,” she said.

But her difficulty connecting did not stop there. Hart is a black queer femme activist who was diagnosed four months before her wedding. Before deciding with her health care team that she wanted to have a mastectomy, she was interested in seeing what the scars would look like. But at first, all the images that her doctor showed her were of white women.

“I just got really tired of not seeing myself. So, I just inserted myself into a narrative that I wasn’t in,” she said, explaining how, after she decided to go through with the mastectomy, she went topless at a large music festival.

“I didn’t know how it would go, I just wanted to make a difference,” she said.

Now, as an activist and adjunct faculty member at Columbia University and Hunter College, both in New York, Hart continues to share her thought-provoking ideas around sexual expression, health, race, gender, chronic illness and disability.

“I’ve always lived my life on the frontlines,” she said.