By Deborah Borfitz

July 13, 2021 | Misinformation is not a new concept, but it covers a lot of territory and can be tricky to combat, according to experts participating in a panel discussion on the topic at the recent DIA 2021 Global Annual Meeting. Intentional misinformation, sometimes termed “disinformation,” can be viewed as distinct from the larger body of misinformation that is unintentionally wrong or misleading but nonetheless contributes to poor decision-making, says Brian Southwell, senior director of the Science in the Public Sphere Program at RTI International as well as co-founder of the Duke Program on Medical Misinformation.

“As humans, we’re all vulnerable under the right circumstances,” Southwell says. If more people appreciated how susceptible they are to misinformation they might more empathetically look at ways to address the problem.

Misinformation is pervasive and is seen in places that are regulated but not censored per se, he continues. “There are things you can do to address it.” 

It is not always important to distinguish between the two types of misinformation or even possible to identify root causes. A few bad actors are generating a “fair amount” of the misinformation in circulation, Southwell says, but well-intentioned journalists can also make mistakes or misinterpret scientific findings. 

Factual inaccuracies, where the science is known, is what needs addressing, he adds. People still can and should debate issues over which they have differing views. 

Public health crises always expose the extent of health disparities, notes panelist Richardae Araojo, director of the Office of Minority Health and Health Equity at the U.S. Food and Drug Administration (FDA). A key contributing factor is not having good information “as a baseline.”

Just simple corrections can help counter misinformation, and healthcare practitioners and other trusted members of a community are in a “perfect position” to deliver those messages, says Briony Swire-Thompson, senior research scientist with Northeastern University Network Science Institute. In addition to retracting false information, they might present “factual alternatives” with clarity and empathy. 

The facts are ideally stated as simply as the original misinformation, but things are not always as conveniently straightforward in the real world, she adds. 

Corrections only work if the messages are widely disseminated in a timely manner to the right audience, Southwell points out, and do not sit on a website few people ever visit. “You need to fight fire with fire.” 

It is a common misperception that corrections increase misbeliefs, says Swire-Thompson. “Correction is helpful.”

It is of course impractical to react to every instance of misinformation, says Melanie Carr, head of the stakeholders and communication division at the European Medicines Agency (EMA). Knowing when to respond can sometimes be a struggle. 

Base it on the severity of the potential harm, Southwell suggests. If only 100 people saw the misinformation, a response is probably unwarranted. 

Presenting accurate counter-information positions the purveyors as trusted messengers, adds Araojo. That could extend their reach with patient communities and influencers who might be targets of the disinformation. 

Regulatory Response

Regulators have an important role to play in mitigating the impact of misinformation by providing easy access to reliable information, thereby enabling truly informed healthcare decision-making, says Carr. To that end, the EMA is highly transparent, makes communications meaningful by explaining science and the fast-track development process in plain language, and actively listens to the concerns of patients and healthcare professionals about COVID-19 vaccination.

A similar strategy is taken in the U.S., says Araojo, noting the emphasis on making communications meaningful to diverse audiences. In addition to using multiple means and modes of communication—e.g., infographics, social media, webinars, conferences, and outreach events—hosted conversations are scheduled for later in the evening and campaigns are tailored to multiple languages and cultures. 

Regulators have a crucial, but difficult, role to play in sitting alongside the broader audience navigating the informational environment as it unfolds in real time, says Southwell. The question is how much they are set up to do in this arena. 

Ways to effectively tackle misinformation is a new, multidisciplinary area of science that is in a constant state of flux, says Swire-Thompson. Scientists need to practice patience and follow developments in the field. 

The information gaps that need addressing can vary in many ways, including by race, ethnicity, culture, geography, and health status, says Araojo. Lack of trust has been a key barrier to advancing diversity in clinical trials, but not universally across populations, she cites as an example. 

Low participation in trials among African Americans is less about distrust than not being asked, Araojo says. Minorities are willing to participate if they are educated about the protections in place. 

The FDA engages in regular “listening sessions” with a range of stakeholders and patients, most recently those involved with lupus clinical trials, she adds. It has been important to enter those conversations without any assumptions and to listen as well as speak to combat misinformation. 

Southwell recommends having an open dialogue with individuals in groups identified as resistant to trial participation and assume only that they want to stay healthy. Misinformation is “so vexing because it spreads for legitimate reasons… [people] are trying to make sense of the world and are looking for hope.”

The EMA is mindful of the “melting pot of cultures” across the European Union, says Carr. While a recent survey found vaccine confidence sat at about 85% region-wide, at a country level the figure varied from a low of 29% in Cyprus to a high of 95% in Denmark.

Beliefs also change over time, adds Swire-Thompson, so people may eventually forget corrected information without ongoing engagement. Older adults also share more false information, so “try to get to them [proactively] before correction is needed.”