An oncologist recently shared a story with us about a patient with a rare but often curable type of cancer called sarcoma. In addition to seeing an oncologist, the patient sought alternative treatment from a “wellness” clinic that advised the patient to follow a strict diet that restricted calories and protein.
When the patient returned to the oncologist for treatment, he was severely malnourished and dehydrated. Because of this deteriorating health, the patient was unable to tolerate even mild side effects from standard cancer treatments that had proven effective, limiting the oncologist's ability to provide treatment that could have worked. This patient was harmed by following seemingly legitimate advice from a self-proclaimed “expert,” but it is difficult to know who to trust when there is so much information available. This harms individuals and undermines confidence in the system as a whole.
In this content-saturated age, 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 diagnosis, it can be difficult and overwhelming to navigate this overwhelming amount of information, filter out the bad information about cancer, and identify high-quality, evidence-based recommendations. Unverified cancer misinformation causes significant but often unknown harm every day.
In a recent study, cancer experts evaluated the top 50 most shared news or blog articles on social media about four common types of cancer: breast, prostate, colorectal, and lung. Nearly a third contained some misinformation, and 77% contained downright harmful information that can cause patients to delay curative treatments, take potentially toxic and unproven treatments, and often suffer financial harm through the direct costs associated with them. The claims ranged from overly general – “chemotherapy is ineffective for metastatic breast cancer” – to baseless and downright dangerous – “lung cancer can be treated with cannabis oil.”
The American Cancer Society (ACS) estimates that global cancer cases will grow by 77% by 2050, so the potential consequences of the spread of cancer misinformation are stark. The cancer community, traditional media, and social media must do more to prevent misinformation from thwarting our progress against cancer.
Combating misinformation by improving health literacy is a critical component of President Joe Biden's Cancer Initiative and National Cancer Plan. These initiatives seek to prevent more than 4 million cancer deaths in the United States by 2047 and improve the experience of people with cancer. To achieve this goal, we must allocate resources where they make a difference and focus our efforts best.
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 impact and support people with cancer. For more than 20 years, we have served our communities with separate but somewhat overlapping web resources for patients. This repetition is costly and potentially confusing for patients and their families who are fearful and anxiously searching for trustworthy information.
Make it easier to find good information
That's why, as the global oncology community gathers in Chicago through June 4, we announced that we are consolidating patient-centered cancer information services on Cancer.org. Our shared goal is to help patients and the cancer community trust that they are getting the best expert-vetted information available, at the lowest cost and the least confusion.
It is unusual for leaders to choose to relinquish control, close programs, and pool resources, thought, and expertise, but that is exactly what we do because it is best for those we serve. Reducing duplication, aligning goals and pooling resources enhance our ability to support patients. In the process, we free up valuable resources to provide additional support to patients, and we hope other organizations will consider joining us.
Making it easier for patients and their families to access cancer information and evidence-based treatment content will enable them to be informed decision-makers in their care, a critical step toward better health outcomes. But curating high-quality information will not be enough to stop misinformation and achieve the cancer goal.
Social media platforms should help monitor and combat cancer-related misinformation (and disinformation). Health care systems and physicians must share reliable information about cancer with patients. The media must report cancer news accurately and responsibly. Cancer care providers must better meet patients where they are – speaking clear language about evidence-based treatments and listening to them when they express their concerns.
A cancer diagnosis is a scary experience. Not knowing if you can trust the information you receive shouldn't be part of anyone's cancer journey.
Karen E. Knudsen, MD, PhD, is CEO of the American Cancer Society and the ACS Cancer Action Network. Clifford A. Hodis, MD, FACP, FASCO is CEO of the American Society of Clinical Oncology.
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