Issue: April 2021
Source: Duron G, et al. Curr Opin Rheum. 2021; doi: 10.1097/BOR.0000000000000724.
Zhang J, et al. Prev Med. 2020;doi:10.1016/j.ypmed.2020.106408.
Disclosures: Chou, Coe and Zhang report no relevant financial disclosures. Dizon reports his role as a founding member of the Collaboration for Outcomes using Social Media in Oncology. Solomon reports receiving salary support through research grants to his institution from AbbVie, Amgen, Corrona, Genentech and Janssen. He also receives royalties from UpToDate. He has no personal financial relationship with any pharmaceutical company.
April 19, 2021
13 min read

Going viral: Squaring off against social media’s medical misinformation ‘infodemic’

Issue: April 2021
Source: Duron G, et al. Curr Opin Rheum. 2021; doi: 10.1097/BOR.0000000000000724.
Zhang J, et al. Prev Med. 2020;doi:10.1016/j.ypmed.2020.106408.
Disclosures: Chou, Coe and Zhang report no relevant financial disclosures. Dizon reports his role as a founding member of the Collaboration for Outcomes using Social Media in Oncology. Solomon reports receiving salary support through research grants to his institution from AbbVie, Amgen, Corrona, Genentech and Janssen. He also receives royalties from UpToDate. He has no personal financial relationship with any pharmaceutical company.
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If anyone still believed that social media is just a benign way for friends near and far to connect, that notion died with COVID-19.

As most of the world’s population remained stuck at home with the internet as their only lifeline, social media was exposed for what it can be: a snake pit, rife with predators and misinformation. For individuals managing a chronic disease amid a global pandemic, the consequences of poor online decisions and ongoing exposure to untruths and half-truths can literally be life or death.

Source: Adobe Stock.
Source: Adobe Stock.

Wen-Ying Sylvia Chou, PhD, MPH, program director in the health communication and informatics research branch in the behavioral research program at the National Cancer Institute, sees COVID-19 as a “teachable moment” for doctors everywhere. “For too long, social media was seen as a Wild West that could not be controlled,” she told Healio Rheumatology. “But the pandemic has forced us to make a commitment to understanding the extent of the misinformation available to patients.”

Last fall, WHO described COVID-19 as an “infodemic” that inhibited containment efforts by governments and health care organizations alike.

“This is why it is so important for patients to have access to trusted, up-to-date and actionable information that meets every patient’s health literacy standards and is specific to their rheumatologic conditions,” Joseph Coe, MPA, director of education and digital strategy at the Global Healthy Living Foundation, said in an interview.

But what patients read online is just one part of the equation. There are also issues with what people share, including personal information about their diseases and treatments. This can lead to a host of pitfalls and complications that raise questions about privacy and free speech that have yet to be adequately answered by anyone, much less by the rheumatology community.

In the Clinic

Should individual rheumatologists be expected to check and correct all misinformation gathered from social media with every patient, especially given the time constraints in a typical visit? Yes and no.

Certainly, according to the experts, physicians should not be expected to proofread every post their patients make and vet every website their patients read. But it absolutely behooves doctors to understand how their patients behave online, and how those behaviors may be affecting attitudes toward their disease, medication adherence and views on thorny issues like vaccination.

“We need to partner with patients, especially as they try to engage in their own care,” Don S. Dizon, MD, FACP, FASCO, told Healio Rheumatology.
“We need to partner with patients, especially as they try to engage in their own care,” Don S. Dizon, MD, FACP, FASCO, told Healio Rheumatology. “Instead of rolling our eyes at what patients have discovered, we need to be teachers, to help people understand what they are reading, especially when the information is not written for lay people, and especially when it reflects opinion, rather than evidence.”

Source: Don S. Dizon, MD, FACP, FASCO.

As with any aspect of the rheumatologist-patient relationship, honesty and flexibility are paramount.

“It is critical that clinicians accept the fact that patients are online and looking for information, before they meet you and then afterwards,” Don S. Dizon, MD, FACP, FASCO, head of community outreach and engagement at the Cancer Center at Brown University and head of the breast and pelvic malignancies program at Lifespan Cancer Institute in Providence, said in an interview. “We need to partner with patients, especially as they try to engage in their own care. That means taking their questions seriously, especially when it comes to things they read on the internet.”

In short, Dizon is clear that social media has “changed medical practice” forever. “Instead of rolling our eyes at what patients have discovered, we need to be teachers, to help people understand what they are reading, especially when the information is not written for lay people, and especially when it reflects opinion, rather than evidence. We need to embrace it.”

Helping patients understand and work through the pressures and repercussions of their online diet is likely to be part of any rheumatologist’s routine far into the future.

What Patients Are Reading

To really understand patient online behavior, it is important to understand the kind of information available to them. It may seem that there is simultaneously too much and not enough information for patients to digest.

In their recent study published in Current Opinion in Rheumatology, Duron and colleagues combed through the vast and varied COVID-19-related literature through May 2020 and found what they called a “parallel pandemic of misinformation.” They noted, “Patients with rheumatic diseases have faced shortages of critical medications and a lack of information tailored to their health conditions and medications.”

If there is a silver lining in the blight of misinformation that has emerged online in recent years, it is that people — doctors and patients alike — are at least aware of the problem. “Most of my patients who discuss social media with me acknowledge that a lot of what they read is inaccurate,” Daniel H. Solomon, MD, MPH, chief of the section of clinical sciences in the division of rheumatology at Brigham and Women’s Hospital and professor of medicine and Liang Distinguished Chair at Harvard Medical School, said in an interview. “They often come in to discuss what they read and ask if it is accurate.”

Each of the experts who spoke to Healio Rheumatology highlighted the need to educate patients about the vast disparity in the veracity of what they read, from peer-reviewed journal articles to anonymous comments in a news article thread. But telling patients to find information from vetted sources is one thing. Whether they follow that advice is another. And whether they are able to understand the difference between reliable and spurious findings is still another.

Jingwen Zhang, PhD
Jingwen Zhang

“Because social media enables all different kinds of sources to post and share health-related information, it is hard to gauge the quality or veracity of a lot of information and claims,” Jingwen Zhang, PhD, assistant professor in the department of communication and department of public health sciences, at the University of California, Davis, told Healio Rheumatology. “For an average person without much medical and specialty knowledge, conflicting information online can create confusion, anxiety and a sense of helplessness in managing one’s health.”

It is important to take such factors head on, acknowledging that patients are vulnerable and looking not only for information, but for connection. This is why sites like CreakyJoints that blend data and networking can be so valuable.

Joseph Coe, MPA
Joseph Coe

“Many patients find comfort in the social community that patient organizations like ours create,” Coe said. “However, we also feel the responsibility of educating our audience about how to recognize credible, evidenced-based information vs. sensationalized content, which is packaged loudly and provocatively on social media. For example, it is worrisome when we spot companies that want to prey on vulnerable patients by trying to sell cures that have no basis in science or fact.”

Perils of Low Health Literacy

The most vulnerable patients are those with low health literacy. “It is important to understand that social media algorithms are highly sophisticated and the targeting and tailoring may create information silos for patients,” Chou said.

Wen-Ying Sylvia Chou, PhD, MPH
Wen-Ying Sylvia Chou

This type of microtargeting can lead to patients finding themselves in echo chambers where no new information can penetrate, according to Chou. “Once you are in certain online groups, it is difficult to get out,” she said. “When you have a patient with low health literacy who ends up in a situation like this — in anti-science groups that are strongly opposed to any type of traditional information gatekeepers — it can really pose harm and risk. It will be difficult to build trust with a patient in this situation.”

Limited understanding of medical and scientific topics is just part of the problem, according to Zhang. She suggested that “low digital media literacy” can compound existing issues with health literacy. “It is time for doctors, public health workers and communication scholars to work together with the public to address challenges brought by the new media information environment,” she said.

Unfortunately, at the moment, there is no rubric for managing all of this, according to Chou. “It’s important to understand where people live in terms of their information ecosystem, because that helps you see how they react to both social media and to you as their clinician,” she said.

With so many potential perils simply from online reading, one might think that patients would be apprehensive about posting themselves — this is not the case. Rheumatologists are then forced to consider what patients themselves may be sharing.

Think Twice Before Posting

Daniel H. Solomon, MD, MPH
Daniel H. Solomon

Perhaps the first thing for rheumatologists to consider is that there is a wide range of online and social media behaviors among their patients. “I let my patients know that I share almost no personal information on social media,” Solomon said. “However, I recognize that my point of view is not necessarily the same as a younger person who spends much of their life online.”

Today’s patient is “no longer passive,” according to Dizon. “Many have discovered how to advocate for themselves, and advocate for others in their own online communities.”

Dizon has a clear message for clinicians treating patients who have reached this “influencer” level of online advocacy. “Being an influencer — locally or globally — comes with the responsibility of pointing out what is reliable and what is not reliable, and to explain why that is,” he said.

But not all patients aim to influence others. Some are just looking to connect, according to Zhang. “It is useful to disclose certain information to facilitate discussions whether for emotional needs or treatment plans,” she said.

Online “venting” can have some positive effects, largely by helping to manage stress and anxiety, according to Zhang. However, the risk is that sharing personal information, including pictures, to a group can lead to patients losing control of that information. News travels fast.

“Another problem is that individuals do have very different health conditions and environmental factors that shape their disease trajectory and conditions differently,” Zhang said. “Although people can learn much new information from other patients, it is not always accurate to compare treatment plans or disease specifics. Simply put, other people online know less about you than your doctor.”

The issues with over-sharing extend beyond the clinic. Chou pointed out that posting private information could hurt anything from a patient’s job prospects to their personal relationships, depending on the nature of the post and the way it is perceived.

“In terms of privacy, freedom of expression and speech, there is just so much gray area about the things people post online,” Chou said. “Sometimes people don’t realize their posts are publicly available and can be accessed by those that they didn’t intend the message for.”

In fact, these are not the only gray areas rheumatologists and their patients must address.

Living in the Gray

While most clinicians have tools in place to deal with wildly and obviously incorrect information, dealing with half-truths, exaggerations and personal anecdotes can be a trickier matter.

“This is a major point to consider: Who should declare what is truth and what is misinformation?” Dizon said. “It is one thing to flag patently obvious falsehoods, but it is quite another to flag things when you do not agree with them, solely because you disagree with the interpretation of data or the way data have been presented.”

Zhang described these gray-area discussions about health and diseases as “a very complex space,” and she acknowledged the necessity of allowing for the subtleties and nuances of how patients perceive their health and wellness. In fact, she believes that forthright discussions on areas where doctors and patients disagree can be “useful for understanding more about our health and disease experiences.”

Chou agreed. “Of course, we can deliver messages about source credibility and message credibility,” she said. “But it is also important to be fully transparent about what we know and what we don’t know.”

The key issue for Chou is whether, or how, to dispute someone’s personal experience. While everyone is entitled to share their own experiences, and even to elaborate or exaggerate, it can put clinicians in a difficult position when a patient trusts that source and believes that exaggerated opinion. It is critical for rheumatologists to have at least some form of a plan to combat these claims. “Steering people towards credible medical information sources by offering ‘information prescriptions’ or trying to point out the lack of credentials or possible ulterior motives of people promoting false information, may be helpful strategies.”

It may be necessary to proceed with caution in these cases, according to Chou. “The emerging science of debunking has shown that sometimes making too big of a deal out of something can actually give it more oxygen,” she said.

Chou offered the example of a patient saying that drinking ginger tea makes her feel better. “Something like that is fine, maybe you can let it go,” she said. “But if the patient says ginger tea will cure her disease, that is a huge leap. Clinicians need to learn how to let some of the harmless misinformation go. You have to pick your battles.”

Navigating these case-by-case gray areas is no easy task, particularly given the backdrop and potential consequences of COVID-19. There is perhaps no more critical place to strike the right tone than when discussing vaccines.

Shot in the Arm

In their 2018 review in Preventive Medicine, Zhang and colleagues surveyed 1,198 participants to determine how fact-checking labels for misinformation impacted attitudes toward vaccines. “Participants were randomly assigned to six conditions: misinformation control, or fact-checking label conditions attributed to algorithms, news media, health institutions, research universities, or fact-checking organizations,” the researchers wrote.

Results showed that when participants were presented with misinformation, fact-checking labels had more of a positive impact on vaccine attitudes than the misinformation control labels (P = .003). Conspiracy ideation had a moderating impact on vaccine attitudes (P = .02), as well. “Incorporating labels from trusted universities and health institutions on social media platforms is a promising direction for addressing the vaccine misinformation problem,” the researchers concluded.

“Highlighting the benefits and risks of the vaccines by pointing to the source data presented and available at the FDA and CDC websites can help,” Dizon said. “Pointing out community authoritative voices in infectious disease and public health can also do a lot to help people learn in as unbiased a way possible.”

For Chou, steering patients toward clinical knowledge is just one aspect of contradicting vaccine hesitancy. Another part is acknowledging the patient experience.

“Someone may post about a side effect they had after getting one of the vaccines, and they may even exaggerate that effect,” Chou said. “This can sway people who are still hesitant about vaccination.”

For doctors to pretend that there are no side effects to vaccines and other treatments is a mistake, according to Chou. “These things are never black and white, and that is ok,” she said. “We should always try to give the best information using the best of our knowledge at any given time.”

Most rheumatologists talk about how the chronic nature of rheumatic and autoimmune diseases can foster trust with patients over time. There may be no better time to leverage that trust than in talking to hesitant patients about what they have read about the vaccines. “Be respectful, compassionate and empathetic but firm,” Chou said. “Express your opinion without being dismissive.”

Walking this tightrope is not easy, particularly for older clinicians who are not accustomed to being challenged by something a patient has read. Perhaps even more frustrating is addressing health information patients have obtained from famous people.

Disputing Celebrity “Experts”

If there is one battle that doctors everywhere, unexpectedly, are being forced to fight, it is with the celebrity health experts that patients follow online. “I often reply to such inquiries by asking where the celebrity was trained,” Solomon said. “Did they attend medical school for 4 years? Did they complete a 3-year residency in internal medicine? Did they spend 3 years in a rheumatology fellowship? I try to impress patients with the importance of years of training allowing an experienced clinician to make judgements about complicated information.”

Celebrity endorsements can be “seductive,” which can also make them all the more insidious, according to Dizon. “We all need to be more aware of what is being advocated by non-medical influencers and do our best to call them out and to point out the criticisms,” he said. “So much of this rests on an open and ongoing dialogue and relationship with the one receiving care and the one rendering it.”

Organizations like CreakyJoints are taking the situation head-on. “We recently cohosted a Twitter chat with the Spondylitis Association and during the chat a high-profile YouTube influencer tweeted positive facts about spondylitis,” Coe said. “We were happy because this raises positive awareness of the disease and potentially drove people to our chat.”

This provided the organization an opportunity to educate patients about how to evaluate the information being presented by celebrities. “Celebrity ‘authorities’ need to be vetted in the same manner as any other health information, making sure our audiences understand the source of the information,” Coe said.

Plan of Action

Like many experts in the field, Coe believes that proactively addressing the reality of social media is the way forward. “For example, we have hosted webinars and chats about racism in health care and COVID-19 vaccination with an autoimmune disease,” he said. “We have started to host live cook-along shows, which build community. Combined, we think these opportunities for engagement help people feel empowered to make health care decisions in partnership with their providers.”

While Solomon has no desire to become a social media influencer himself, he appreciates clinicians who do. “Some of my colleagues have become public figures on social media, attempting to give reputable information to the public,” he said. “This can become a full-time job, but it can be helpful for the rest of us.”

Dizon stressed that any clinician who wants to take that step should be clear about conflicts of interest. “It is something that most of us are learning how to do, but it is so important,” he said. “People need to believe we are speaking in their best interests, discussing topics in as objective a way as possible.”

Failing to disclose industry relationships in any arena — from a blog post to a presentation at an American College of Rheumatology meeting — can undermine that objectivity. “I cannot imagine a time when it is as important as it is right now,” Dizon said.

What this means for Chou is that dealing with social media will take “robust discussion at all levels,” from individual clinicians to policymakers. “Patients have so many fears, worries and concerns,” she said. “We need to make sure that they are getting not just evidence-based care, but evidence-based information about that care, as well.”