Lack of Health Literacy a Barrier to Grasping COVID-19

A lack of health literacy is preventing people from having a good understanding of the novel coronavirus, two speakers said Wednesday at an online briefing sponsored by the National Academies of Sciences, Engineering, and Medicine.

“So many people are confused about the symptoms” of COVID-19, said Lisa Fitzpatrick, MD, MPH, founder of Grapevine Health, a nonprofit organization in Washington that helps design culturally appropriate health information campaigns targeted at underserved populations.

When Grapevine Health sent workers out to talk to people about the pandemic, “So many told us they didn’t know the symptoms,” said Fitzpatrick.

“Although people may access health information on the Internet, TV or radio, somehow we’re not doing a great job of communicating with people about symptoms,” she added. “There were a lot of questions about whether there is a cure, if a cure is being withheld from people, and conspiracy theories. And there is a lot of confusion about how the COVID-19 infection is different from the flu.”

Higher literacy levels “can increase peoples’ ability to take action to manage their healthcare,” said Earnestine Willis, MD, MPH, a member of the Roundtable on Health literacy and a retired professor of pediatrics at the Medical College of Wisconsin in Milwaukee. Strategies to increase health literacy “can help promote trust between communities and providers,” she said.

Alicia Fernandez, MD, director of the Center for Latinx Excellence at the University of California San Francisco, noted that at San Francisco General Hospital, the prototypical hospitalized COVID-19 patient is “a middle-aged Latino man with diabetes and obesity, and limited English proficiency; these were almost entirely monolingual Spanish speakers … This prototypical patient also has low health literacy and little education in Spanish.”

Her organization decided to focus its public health response on prevention, testing, and contact tracing. For the testing piece, the group worked with the San Francisco Department of Public Health to lower barriers to testing.

“The first job was to push out reliable public health information in Spanish, as fast as possible. We did lots and lots of radio shows — interviews and call-in shows,” she said. “Second, we worked with community-based organizations. Their own staff needed physicians to whom they could ask questions and get the answers they needed so they could perpetuate accurate, rapid information.” The group also put on five webinars for the community-based organizations as well as four Facebook Live sessions, and had a “street team” go out to food distribution banks to disseminate face masks and information.

Fitzpatrick recommended designing communication for the audience. “On the street you hear different terms than you might hear in the media.” For example, some people call coronavirus by different names, she noted. And she disagreed with what she said was a common consensus that because many economically disadvantaged people don’t have desktop or laptop computers, they can’t be reached digitally.

“Almost everyone we run into on the street has a smartphone,” Fitzpatrick said. “There are ways to reach people with technology and we should not allow the debate about the digital divide to [make us not incorporate digital tech into our outreach].”

In San Francisco, the center designed its materials using plain language, and vetted the language “to avoid country-specific idioms and to focus on simplicity,” said Fernandez. “We used a ‘low-literacy format’ in which less is more” — a concept very difficult for academics to implement, she noted. “When we do webinars, we limit speeches to 7 minutes so that community members and community-based organizations can ask questions.” Even beyond written materials, “we use videos that we can text to peoples’ phones so they can watch again and again, explaining what does it mean if you have a negative test or if you have a positive test.”

To encourage people to get tested, “we really tried to put out good information about where to go,” she said. At first, testing was by appointment, which was a barrier both because people had to call to make the appointment, and because the city was asking them very intrusive questions in order to find out whether they had insurance or were eligible to be enrolled in public programs such as Medi-Cal. “By having staff serve as ‘secret shoppers,’ we were able to get that policy changed rapidly,” she said.

Contact tracing was another sticky issue, because asking people to name everyone they came into contact with in the 2 days before they got sick “creates a sense of worry about what authorities will do with information, and creates fear,” Fernandez said. “We want people to feel some sort of trust.” She added that her own research on language found that when the physician and patient speak the same language, “it’s easier to create a trusting relationship.”

“There are three coexisting pandemics: COVID-19, poverty, and fear,” said Fernandez. So every time her team talks to people, they explain “that ICE [Immigration and Customs Enforcement] won’t consider coronavirus testing in ‘public charge’ proceedings” in which use of public programs is a factor mitigating against getting a green card or citizenship. “We also explain that in San Francisco, no information will be shared with immigration authorities, so they can name names in contact tracing. But it takes constant discussion on these points to make people feel more secure.”

In their interactions with patients in Washington living in minority communities, “lots of people were asking about whether hot water prevents coronavirus infection,” as well as whether transmission is linked to 5G cellphone towers, said Fitzpatrick. “There is a rumor also that blacks are immune to COVID infection.”

Although many scientists are pinning their hopes on developing a vaccine, “we have a lot of work to do about convincing people of the need for vaccination,” said Fitzpatrick, who is no longer in active practice of medicine. “One-third of my patients when I was practicing refused flu shots for a variety of reasons. We need to think about how to encourage people about vaccination.”