Photos by Chris Myers
As COVID-19 began its spread around the world earlier this year, the pandemic created another kind of global catastrophe: an information crisis. The World Health Organization uses the term “infodemic” to describe the impossible amounts of misinformation and disinformation washing over the world.
Anecdotal evidence spread like wildfire on social media, as patients and health care providers circulated first-person accounts of their encounters with the disease. As the first Westerners to be hit hard by the virus, Italians led the way, hoping to provide a useful warning. Grocery store clerks and postal workers shared their grim tales. Armchair epidemiologists used raw data and plugged them into graphs without explaining the gaps in data or how important the missing pieces were. Charts were presented online in logarithmic scale with no explanation about how log scale differs from linear scale. Without context, every first-person story became representative of “the” COVID-19 experience for a minute or two, and every chart predicted the future. Traditional media outlets sought out experts who could inform their audiences, but digital social media often spoke more loudly.
In many cases, the superspreaders of misinformation have meant well — like the Michigan family doctor who made a YouTube video in March, which went viral, explaining the “sterile technique” for sanitizing groceries and takeout food. The doctor based his technique on a New England Journal of Medicine article about how long the virus stays aerosolized, but he took the information out of context. Carolyn Machamer, a Johns Hopkins cell biologist who specializes in coronaviruses, later explained that “less than 0.1 percent of the starting virus material remains” and that infection is “theoretically possible” but unlikely. Her research was cited by experts in media outlets, but it was too late: Within a week, the YouTube video had been viewed more than 20 million times, and anxiety around groceries was through the roof.
The havoc around hydroxychloroquine is another example of misinformation gone wild, although this one caused people to die. On the heels of two small, noncontrolled clinical trials, President Donald Trump announced in a news conference in March that the Food and Drug Administration had approved emergency use of the drug, typically used to treat autoimmune disorders, to treat COVID-19. The enthusiasm around hydroxychloroquine inspired some people to self-administer the drug. In June, the FDA revoked the emergency use authorization, but by then, an Arizona man had died in March as a result of self-treating with a form of the drug used to clean fish tanks, as did a Florida teen who was administered the drug by her parents after a large church gathering in June. To further complicate the misinformation situation, in May, important studies were published in The Lancet and New England Journal of Medicine showing the drug to be ineffective and perhaps even dangerous. But they were both retracted in June amid concern about data sources.
The information free-for-all has created dangerous confusion, which makes it difficult to know who to trust and makes consensus next to impossible. While doctors and scientists across Johns Hopkins have long been called on to share their wisdom in the local, national and international media, the COVID-19 pandemic — and the profound impact of social media — has lent new urgency and importance to such efforts.
Soon after the pandemic took hold in the United States this past winter, Johns Hopkins became a household word around the globe as millions turned to the COVID-19 Map and Coronavirus Resource Center to track cases, deaths and recoveries in the United States and the world.
But the prominence and credibility of the Johns Hopkins name has required a new kind of vigilance by communications teams across Johns Hopkins Medicine (JHM) and The Johns Hopkins University.
In March, a post allegedly authored by a Johns Hopkins epidemiologist (who does not exist) went viral on social media, giving bad advice and misinformation. The JHM communications team raced to respond to and refute the post, and worked with Snopes, a fact-checking website, to discredit the rumors. Communications specialists at JHM even created a webpage to give tips on how to spot rumors and where to find credible information.
“In times of crisis, there need to be trusted sources of reliable and accurate information,” says Kim Hoppe, vice president of communications for Johns Hopkins Medicine.
‘A Beautiful Disruption’
In this age of polarized ideologies and microtargeting by social media, Americans are getting information from wildly different sources, many of which are not credible. This puts even more pressure on experts to communicate in ways that will make the truth stick.
“The challenge is to communicate to all audiences effectively, including those distrustful, skeptical and sometimes educated at a sixth-grade reading level — these are important and often vulnerable members of our society whom we have to reach,” says Johns Hopkins surgeon Marty Makary, a Fox News medical contributor and author of two New York Times bestselling books.
Makary is also a contributor to The Wall Street Journal and often does interviews with outlets such as CNBC and The Today Show. The rapid rate at which the science on COVID-19 changes has presented a significant challenge for medical experts, he says. What the medical community thought was true a month ago may not be true anymore.
“We’re trying to deliver reliable information in 24 hours instead of in the standard six to 18 months of the traditional research cycle of annual conferences and journals,” says Makary, who is also a professor of health policy and management at Johns Hopkins’ Bloomberg School of Public Health.
“We’ve had this clunky process of evaluating new info and sharing it in a way that’s entirely too slow to respond appropriately to crises like coronavirus. Historically, we physicians have said if there’s an idea, you have to prove it with randomized controlled trials. But during this time, there’s been a beautiful disruption of that rigid system to include clinical wisdom and consensus.”
Makary mentions the doctors in Italy who used social media to describe what they were seeing, as well as Mount Sinai Hospital in New York posting a protocol for ventilator use and doctors at Johns Hopkins talking about convalescent plasma. MedRxiv, a website that publishes pre-prints of research (complete, but not yet peer-reviewed), has been helpful, he says.
“We need randomized controlled trials, but in a crisis, we need to be able to communicate experiences quickly as trials are happening. We’re learning a lot from pre-prints,” says Makary, who is the editor-in-chief of MedPage Today, which frequently publishes stories about early research findings in real time.
There’s a balance to be achieved, naturally, as illustrated by the June retractions from both The Lancet and New England Journal of Medicine of the two different influential studies related to hydroxychloroquine. In both cases, the scientist authors said they could not vouch for the primary data upon which their findings were based.
“Toggling between the research environment and the general public is an art form that has humbled me,” says Makary. “I’ve come to admire those who’ve mastered this skill set, which was not part of our education. I was never taught one of the most valuable skills: communication. I’m reminded of that every time I have to break bad news. And it’s hard.”
Making Complex Information Digestible
Heather Kagan, an internal medicine resident at The Johns Hopkins Hospital, had planned a sabbatical in April so she could work as a medical journalist for ABC News through an internship program. When the pandemic unfolded, she scrapped her plan to move to New York for the month and worked remotely instead. On the job, she interviewed experts for articles, wrote stories and collaborated with journalists. One of her many challenges in this position was the novelty of the coronavirus.
“In a normal setting, we have decades of experience, but with COVID-19, everyone is learning together,” says Kagan. “The scientific community is going through the process together, making mistakes and challenging reasoning.” In April, she wrote a story for ABC News about how death toll predictions keep shifting and why statistical models were fluctuating from week to week.
Kagan says her main challenge, though, was learning how to make complex information digestible, where “digestible” means it’s easily understood by someone who doesn’t have a science background. Journalists are typically told to write to a middle school reading level.
“You have to stay true to the facts but distill it. That’s a really hard line to walk,” she says.
One of her editors at ABC gave her a list of words not to use — medical jargon to avoid in her reporting. On the list of forbidden words were terms like “outcomes,” “indicators,” “clinical” and “presenting.” Terms like “comorbidity” and “risk factor” were also no-no’s because although they have specific and useful meanings in a medical setting, they can be alienating to a general audience.
Like Kagan, Koushik Kasanagottu works hard to avoid what he calls “intraprofessional terms” in articles he writes for outlets such as USA Today.
Some of those medical idioms include terms such as “distress,” “shortness of breath” and “hypoxia.” It’s better to talk about “oxygen levels,” says Kasanagottu, an internal medicine resident at Johns Hopkins Bayview Medical Center. “If you use a term like ‘congestive heart failure,’ six people in the general public will have six different understandings of it. Instead, explain what’s happening, and don’t rely on shorthand.”
While journalists know that prioritizing the audience is key, Kagan has found that the doctors and scientists she interviews often don’t get it. “Many sources grew upset when they read the final versions of the articles I interviewed them for. They often felt like their message wasn’t fully captured in the exact framework they wanted,” she says. “But good reporting serves its audience, not its sources.”
Owning Up to ‘I Don’t Know’
Kagan says that one of the most valuable lessons she’s learned is the importance of saying, “I don’t know.” This lesson applies in a one-on-one situation with a patient, as well as with the general public. “Some doctors think that patients hate uncertainty,” she says, “but I’ve found that not everybody reacts negatively. Some people really appreciate honesty.”
One of her physician mentors, hospitalist Blair Golden, has helped her learn how to have difficult conversations, something she didn’t get a lot of training in during medical school.
“You can say things like, ‘I worry this might happen’ or ‘I’m concerned,’” says Kagan. “If you lead with a question, you can assess what they want to prioritize and understand.”
Joseph Ali is a lawyer by training and an assistant professor at the Berman Institute of Bioethics and the Johns Hopkins Bloomberg School of Public Health. He and several colleagues co-authored a recent letter in The Lancet, “Building trust while influencing online COVID-19 content in the social media world,” which discusses some ways in which social media has undermined effective responses to the global pandemic.
Ali says that being honest about what we don’t know is important — not just as an act of truth telling, but as a way of building trust. “Some experts have a tendency to want to fill in knowledge gaps to provide reassurance,” he says. “That’s coming from a good place with good intentions. But we have to build trust, and in times when expertise is in high demand and we don’t know everything, we must carefully manage communications.”
Makary concurs. “My job is to speak on the data,” he says. “Explain what is known, where there’s suspicion, where there’s high consensus and where there’s no consensus.”
At the Berman Institute of Bioethics, Ali and colleagues note that one of the novel things about social media as a publishing tool is that it’s utterly democratic: There’s limited vetting by gatekeepers or traditional authorities — and that’s appealing to many people. This democratization is especially welcome for those who largely have been kept out of the public arena because of hierarchies that may have bias or discrimination baked into them. But this is often in tension with the scientific context, says Ali, where everything has to be tested, retested and verified.
“This is just the way social media works,” he says. “We see people refer to others in their trusted networks, and those individuals may or may not have expertise. Some people see it as positive, breaking down hierarchical structure to something that’s more horizontal.”
But that becomes problematic when someone in your trusted network posts rumors that sound logical but are incorrect, like the one about the nonexistent Johns Hopkins epidemiologist that went viral and was later discredited by Snopes.
In The Lancet letter, Ali and colleagues proposed social media companies go beyond their current level of regulating content: “A more ambitious role for social media platforms would be to boost efforts by public health authorities by, for example, up-ranking links to recommendations from recognised health authorities, and downranking ads for essential limited medical supplies, such as face masks, to prevent hoarding.”
This recommendation about how “social media giants” can and should be taking even more steps to inoculate the public against dangerous misinformation comes after acknowledging that some social media companies (Facebook, Twitter and Instagram) have already committed to fact-checking, flagging and removing false information. The authors close the letter by saying, “Because of the ubiquitous nature of misinformation related to COVID-19, all members of these broad digital social networks (including government agencies, social media companies, health-care providers, and the consumers or propagators of information themselves) share in the responsibility to help address the broader implications of this pandemic and the underlying infodemic.”
The Art of Listening
Writing commentaries and talking with members of the media takes time — which is at a premium for most physicians and researchers. But to those who are committed to communicating with the public, making the effort is vital. Echoing a sentiment often voiced by other doctors in the news, Kasanagottu says, “We have a moral responsibility as physician-citizens to write for media outlets that our patients read.”
The moral responsibility may just start with listening. Kasanagottu repeats an aphorism he hears often: We spend 10 years learning about complex medical topics and the rest of our lives learning how to talk about them. “We’re not trained in the necessary skills to be an effective communicator,” he says. “It takes intentional effort to gain the skills and practice them.”
The key to learning how to communicate? These experts agree that listening is at the heart of the skill set.
“Unfortunately, we live in a world of shouting fueled by social media where people have strong opinions with little information,” says Makary. “Society has become impatient with the art of listening, and that comes at the expense of learning.”
Ali believes that to truly communicate, we need to understand why people believe what they believe, and we need to focus less on what information is being delivered and more on how it’s delivered. He’s not a big believer in myth-busting, as people who are entrenched are unlikely to change their minds and are apt to dig in their heels even further. Building trust is a better way.
“And we need a way to acknowledge the questions that people have,” he says.
Communication, if done right, is not about what the expert knows and wants to share. Communication begins with the questions that people have. The first step is listening to find out what those questions are.
“We have to approach communication with humility,” says Ali.