When patients go looking for information, how can they know if it is trustworthy and reliable?
Social media groups focusing on lung cancer have proliferated. They are often filled with a combination of anecdotes and connections to articles in unknown journals shared indiscriminately. It is not surprising that patients, caregivers, friends, and advocates often unwittingly spread misinformation. In the complex and fast-moving world of cancer research, even institutions can have trouble keeping information current and accurate.
For example, in July 2023, I was looking at resources for treatment options for a lung cancer patient. I turned to the website of a major Canadian cancer organization with a trustworthy reputation. I was surprised to see information that was clearly out of date. Currently, the standard of care for EGFR mutation is a drug called osimertinib. It became the standard of care across Canada in November 2019. So imagine my surprise when I turned to the targeted therapy page of this organization’s website and the drug was not even mentioned. The site said its last medical review was conducted in May of 2020.
Concerned, I drew this to the attention of both the organization’s research department and the communications department. I received a reply that they update these pages on a 3-year cycle. Though they were due to review the pages this year, they would accelerate the process. They expected the updating to be completed in September 2023. There have been various apologies and extended timelines, but as of February 2024, the pages were still out of date.
In Canada, standards of care vary by province and available diagnostic and treatment options also vary by province—making the job of providing accurate information even more difficult for national organizations, which must put together resources that reflect the realities of each province. In some Canadian provinces for example, oral cancer medications are not covered by health insurance, so they are out of the financial reach of many patients. Availability of PET scans as part of the diagnostic process also varies by province.
Part of the misinformation challenge is that science is a moving target. What is true today may be modified tomorrow. Several years ago, I sat as a patient listening to a debate: “Should durvalumab be given to an EGFR patient?” As I listened to the debate unfold, I realized that the standard of care was not so standard. There were pros and cons on both sides.
After completing chemo-radiation as an EGFR patient, durvalumab was my initial treatment. However, at this point, experts have reached the consensus that there are much more effective treatments for EGFR-positive patients. It has taken some time and experimentation to reach that consensus. As researchers uncover more information through trials and case studies, patients need to be made aware that recommendations will change.
Additionally, the widespread use of “Dr. Google” can cause patients to question the professional knowledge of their providers. Indeed, early in my cancer treatment, I took an article on “lung cancer cough” to my oncologist. He glanced at the article and made the comment, “this is not a reliable journal.” He helped me understand that there were hierarchies of journal reputation. Unfortunately, not all patients are as lucky. Many patients are actively discouraged from seeking answers online without any explanation or understanding. However, today, most patients are not content to rely solely on medical professionals for information.
So how do we find a balance that satisfies patients’ need for information without perpetuating misinformation?
Alan Alda in his podcast, “Clear+Vivid,” love to ask his guests, “How do you tell someone they have their facts wrong?” For patients, the question is a little more challenging. “How do we know if the facts are wrong?” The facts are often found in highly technical, scientific articles; and patients often have little training in how to read a scientific article, let alone understand a Kaplan-Meier curve.
Healthcare misinformation specialist Timothy Caulfield has a few suggestions on how to ferret out misinformation. He asks: “Is it reputable?”
“It’s unlikely that an obscure website shared on Facebook will have access to secret information that cannot be validated somewhere else,” Caulfield said. “Ask yourself, what type of evidence is being used? Is this a testimonial? Who is writing this information, and what stakes do they have in what they are selling? Are they influencers? Do they profit from whatever they may be selling?”
It isn’t solely up to organizations or clinicians to combat misinformation. Patients have a role to play in controlling the spread of misinformation as well. Social media makes it easy to spread information; information that often proves inaccurate or incomplete. Here are three steps patient research advocates can take:
1. Become scientifically literate.
There are several programs like STARS (Supportive Training for Advocates on Research and Science) for patients. They are designed to provide not only basic scientific literacy, but also specific language and terminology used in lung cancer research.
2. Take time to fact check.
When you see new information, check to see if large scientific media are reporting the news as well.
3. Collaborate with trusted sources and experts.
Increasingly, researchers and scientists are realizing that they cannot be silent in the face of patient requests for information. The IASLC has taken huge steps in supporting relationships between patients and lung cancer professionals For example, IASLC funds some patients to attend the World Conference on Lung Cancer. Patients are included in most IASLC committees.
Internationally, the misinformation challenge is greater. What may be accurate in one country is not necessarily true in another. Last year, at an American Association for Cancer Research presentation, I watched a prominent lung cancer researcher discuss successful treatments for lung cancer. As a Canadian, I had the pain of knowing that of the list of 31 drugs he presented only 18 were available in Canada; this was particularly poignant. Still, as a Canadian, I realize that we are far ahead of many other countries.
IASLC President Karen Kelly, MD, said recently of the IASLC’s strategic plan, “Our plan is bold, and we’re off to a strong start.”
One of the cornerstones of the plan is global education, and patients will be key to ensuring accurate information is part of this education.
