To fight cancer misinformation, we need better health literacy

An oncologist recently shared a story with us about a patient with a rare but often curable form of cancer called sarcoma. In addition to seeing their oncologist, the patient sought alternative treatment from a “wellness” clinic that advised the patient to eat an extreme diet restricting calories and protein.

When the patient returned to their oncologist for treatment, they were severely malnourished and dehydrated. Because of this health deterioration, the patient could not tolerate even mild side effects from standard and proven effective cancer therapies, limiting the oncologist’s ability to deliver the treatment that might have worked. This patient was harmed by following seemingly legitimate advice from a self-purported “expert,” but it’s hard to know who to trust with so much information available. This harms individuals and undermines trust in the system as a whole.

In this content-saturated era, we unfortunately hear stories like this all the time as we support people with cancer and the doctors who care for them. For people facing a frightening and destabilizing cancer diagnosis, it can be difficult and overwhelming to navigate this information overload, filter out bad cancer information, and recognize high-quality, evidence-based recommendations. Unchecked cancer misinformation causes significant but often unrecognized harm every day.

In a recent study, cancer experts evaluated the top 50 most-shared news articles or blogs on social media about four common cancer types: breast, prostate, colorectal, and lung. Nearly a third contained some misinformation, and a whopping 77% of those contained outright harmful information that could result in patients delaying curative treatments, taking potentially toxic and unproven therapies, and often being subject to financial harm via associated out-of-pocket costs. Claims ranged from overly general — "chemotherapy is ineffective for metastatic breast cancer" — to truly unfounded and dangerous — "lung cancer can be cured with cannabis oil."

The American Cancer Society (ACS) estimates that global cancer cases will grow 77% by 2050, so the potential consequences of proliferating cancer misinformation are stark. The cancer community and traditional and social media must do more to stop misinformation from thwarting our progress against cancer.

Fighting misinformation by improving health literacy is a critical component of President Joe Biden’s Cancer Moonshot initiative and National Cancer Plan. These initiatives seek to prevent more than 4 million cancer deaths in the U.S. by 2047 and improve the experience of people touched by cancer. To reach this goal, we must allocate resources where they make a difference and better focus our efforts.

As the largest patient and physician organizations in oncology, our two groups — the ACS and the American Society of Clinical Oncology — have a unique opportunity to influence and support people with cancer. For more than 20 years, we have served our respective communities with separate but somewhat overlapping web resources for patients. This redundancy is expensive and potentially confusing to patients and families who are scared and anxiously seeking trustworthy information.

Making it easier to find good information

That is why, as the global oncology community convenes in Chicago through June 4, we announced we are combining our patient-centric cancer information services at cancer.org. Our shared goal is to help patients and the cancer community have confidence that they’re getting the very best expert-vetted information available, with the lowest cost and the least confusion.

It is unusual for leaders to choose to cede control, close programs, and pool resources, intellect, and experience, but that is exactly what we are doing because it’s what is best for those we serve. Reducing duplication, aligning goals, and pooling resources strengthens our ability to support patients. In the process, we are freeing up valuable resources to provide additional patient support, and we hope other organizations will consider joining us.

Making it simpler for patients and their families to access evidence-based cancer information and treatment content will empower them to be informed decision-makers in their care, a critical step toward better health outcomes. But curating high-quality information won’t be enough to stop misinformation and realize the Cancer Moonshot.

Social media platforms must help monitor and counter cancer misinformation [and disinformation]. Healtcare systems and clinicians must share credible cancer information with patients. Media must convey cancer news accurately and responsibly. And cancer care providers must better meet patients where they are — speaking in plain language about evidence-based treatments and listening to them when they express concerns.

A cancer diagnosis is a frightening experience. Not knowing whether you can trust the information you receive shouldn’t be a part of anyone’s cancer journey.

Karen E. Knudsen, MBA, Ph.D, is chief executive officer for the American Cancer Society and ACS Cancer Action Network. Clifford A. Hudis, MD, FACP, FASCO is chief executive officer of the American Society of Clinical Oncology. 

The views and opinions expressed by contributors are their own and do not necessarily reflect those of the Chicago Sun-Times or any of its affiliates.

We welcome letters to the editor and op-eds. Check out our guidelines for both.

Send letters to letters@suntimes.com