When cases of COVID-19 began rising in Boston last spring, Pooja Chandrashekar, then a first year student at Harvard Medical School, worried that easy-to-understand information about the pandemic might not be available in the many languages spoken by clients of the Family Van, the health services and health literacy program where she was working at the time.
So Chandrashekar recruited more than 175 multilingual health profession students from around the U.S. to start the COVID-19 Health Literacy Project. Its aim: Create clear, understandable information about the virus in more than 40 languages, including English. The group's COVID-19 fact sheets, vetted for accuracy and readability by faculty members who speak and read those languages (the first Urdu effort was deemed too formal), were shared with community organizations around the world. They've been downloaded more 250,000 times so far in over 150 countries.
Each sentence of the fact sheets must be carefully crafted, the volunteers have found, because there is so much room for misunderstanding.
Take for example, the common medical guidance that anyone who thinks they might have COVID-19 should call a doctor.
"Translated incorrectly," Chandrashekar says, "this could be interpreted as 'Don't go to the emergency room until you call your doctor — even if you have symptoms of severe illness.' " And that could, in some cases, be a fatal mistake.
The sudden global appearance in 2020 of COVID-19, a new and often lethal viral illness, has meant the scientific evidence on what to do to prevent and treat the virus has been changing rapidly. Simply keeping up with the latest understanding and guidance has been especially challenging for a number of groups in the U.S. — people who speak little or no English, many older adults, people with limited education or cognitive skills and really anyone who finds the often-opaque language of health care too difficult to understand, says Michael Wolf. He's a professor at Northwestern University Feinberg School of Medicine who studies the ways health communication can go wrong.
"Confusion over what a health provider or website is trying to convey can actually lead to misinformation and mistrust of the very things people need to protect themselves," he says.
Problems with health jargon aren't new
The U.S. Department of Health and Human Services defines health literacy as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." By that definition, about 14% of Americans are deemed to have "below basic" health literacy, according to Joseph Dexter, a science data fellow at Harvard University.
Medical jargon has long been a problem, Wolf notes.
"Drug names are typically multisyllabic and difficult to pronounce," he says. "Drugs like acetaminophen often get confused with other drugs, such as amoxicillin, which can make it hard for people to remember which drug they are taking or took previously, when giving a medical history."
Another common problem, he says, is "vague instructions on prescription vials." How should one interpret "twice or three times daily" when taking a medicine? Is that over a 12-hour day, or over 24 hours? And how much in each dose?
Many consumers also run into dangerous trouble trying to decipher the labels on nonprescription cold and flu medicines and pain relievers.
"Since so many products contain multiple ingredients," Wolf says, "those with low health literacy have been found to be at risk of 'double dipping' — taking two products that each contain acetaminophen or each have an ingredient that causes sleepiness." Those multiple doses can add up to produce dangerous side effects.
In a review published in August in JAMA Network Open of federal and state web content about the pandemic, Dexter found that content from U.S. government agencies — including the Centers for Disease Control and Prevention and all 50 states — was often pitched higher than the recommended eighth-grade level, making it too hard for millions of Americans to understand fully.
According to the review's authors, the content often exceeded recommendations for the number of words in a sentence, word size and the use of difficult terms related to public health.
Instead of telling patients that "following safety precautions can reduce food-borne disease transmission," publications that write about food safety should simply say "follow these rules to avoid getting sick," a CDC guide to health literacy advises.
It's also crucial, Chandrashekar notes, that any public health guidance be culturally competent and understood by audiences of different ages.
"Our fact sheets originally recommended that people call 911 if they noticed bluish lips or face," she says. Volunteers with her literacy project noted such guidance wasn't helpful for many people so they rewrote the language to describe more accurately this symptom of low oxygen levels as "discolored" lips or face rather than bluish.
Another project based in Southern California — Translatecovid.org, launched in May 2020 out of UCLA — also helps people find COVID-19 resources in different languages.
A frequently updated FAQ on the site's homepage was crafted by professionals at UCLA's Fielding School of Public Health and translated into more than a dozen languages, including American Sign Language. Anne Pebley, a professor in the school's department of community health sciences, notes that nuances in phrasing in each language can have major ramifications in public health.
For example, she points out, the translatecovid.org website deliberately uses the word "mascarilla" as the Spanish term for face mask, while some other public information campaigns use the term "cubreboca." The latter term literally means "covers mouth," but could be misunderstood as implying that the nose need not be covered, Pebley says.
The way the health information is presented visually can be important, too. The COVID-19 Health Literacy Project has now created versions of their fact sheets for kids — with separate ones for preschoolers, grade-school students and adolescents.
The page aimed at children ages 3 to 6 calls the coronavirus "a germ that can make people sick."
"We needed to be careful to avoid language that can make young kids fearful or anxious," Chandrashekar says, "and chose a layout — using friendly animal characters as graphics and bright colors — that would resonate."
The overall effort is making a difference, she says.
"I keep getting emails and letters from people who speak little to no English thanking us for giving them information about the virus they hadn't had before."
Going beyond the printed word
Health literacy initiatives have become even more important in 2021, experts say, with millions of people still unvaccinated against COVID-19, often because they don't understand the information offered or don't know where or how to get the shots.
Dr. Alicia Fernandez, director of the Latinx Center of Excellence at the University of California, San Francisco, says she noticed when the vaccine rollout began that many health systems were reaching out to patients via the online portals of their electronic health systems, and that tendency left a lot of people out.
"Health care systems are not set up to be as useful for patients with low health literacy, and the pandemic has exposed that," Fernandez says. "In the last decade, or so, health care systems have relied more and more on patients doing things for themselves — like filling out forms online and accessing test results online rather than getting a call from the doctor."
The solution, she says, might be similar to what happened after airlines introduced self-serve kiosks instead of relying on representatives to check in passengers and their luggage.
"When the airlines saw so many people having trouble checking their own bags, they added people to help at the kiosks, and that's what we need to do in health care as well."
The "No Barriers" program at Stamford Health, a hospital and health care network in Stamford, Conn., is trying to cut through that confusion, working one-on-one, person to person to help people in the community get vaccine appointments who might otherwise fall through the cracks.
The program reserves blocks of vaccine time slots and has partnered with the city's health department, the local chapter of the NAACP and other local groups to reach community members who need help getting vaccinated, says Ben Wade, a senior vice president for Stamford Health.
Staffers in the program are trained to see themselves as "ambassadors" — and translators, when that's needed — who, along with making vaccine appointments or giving shots also give directions and allay fears. The staff includes health care providers and also transportation aides, who can get people to and from their appointments, if that support's helpful.
Solange Loblack-Durand, one of the people recently vaccinated through the program, says she'd been hearing and reading stories of inaccessible vaccine sign-up websites and crowded, non-distanced lines for shots and had been worried about how to schedule and then safely get her shot. So when the human resources department at the small supermarket chain where she works invited her to take a vaccine slot Stamford Health was offering to the store's employees, "I grabbed it," a gleeful Loblack-Durand says.
When she got to Stamford Hospital for her first vaccine appointment in mid-March, she says, she "felt like a celebrity," after being greeted by an ambassador as she walked in the door. She was escorted to a cubicle, where she could ask questions and share her ID privately. After she got her shot, a nurse who was handing out water directed her to the appointment desk to schedule her second shot and then to an observation area to be sure she had no allergic reaction. Soon another of the volunteer ambassadors cleared her to leave and directed her to the exit. "They took care of it all for me," Loblack-Durand says.
The program originally was scheduling appointments for just one day a week, but it has proved so successful in getting people immunized it has recently been expanded to five days and 400 vaccination slots per week.
So far, the staff's helped more than 3,000 people get COVID-19 shots without having to navigate a website or call a hotline.
Stamford Health's Andie Jodko says additional funding the program received in April will enable it to expand to "focus on a 'door-to-door' approach in the city to help overcome vaccine hesitancy."
"That's important," Northwestern's Wolf says, "because hesitancy can often be a consequence of low health literacy."
Meanwhile, although telehealth appointments have been a boon to many patients during the pandemic, for others the technology is just one more obstacle to getting care.
"Telehealth visits don't work well if you don't have a computer or enough bandwidth for the video visit, or if you can't speak the same language as the doctor," says Dr. Rakesh Patel, CEO of Neighborhood Healthcare, a network of facilities in Southern California's Riverside and San Diego counties that serve patients regardless of their ability to pay.
Early on in the pandemic, worried that patients at risk for the virus would not be able to come into the clinic, Patel's team added the Neighborhood Healthcare logo to a fleet of three cars and loaded them up with medical equipment — including blood pressure cuffs and one online hot spot and tablet per car — so that medical assistants on home visits could help patients talk to physicians if needed.
To make telehealth appointments more equitable in Los Angeles, Anthem Health added two neighborhood Anthem stores that include technology consultation rooms that Anthem members can use for online visits with affiliated physicians. The telehealth visit is set up by store staff on the room's computer, so that patients don't need to have computer skills — they just wait for the doctor to appear on-screen.
Federal funding on the rise
We can expect more health literacy projects aimed at easing the pandemic. HHS recently announced $250 million in funding to go to health literacy programs aimed at COVID-19 safety and vaccinations as part of the American Rescue Plan.
"Information is power, especially the ability to understand and use information to support better health," Dr. Felicia Collins, acting assistant secretary for health, said when she announced the funding in March. "Whether it helps us understand where to get tested or the benefits of the COVID-19 vaccine, information is a crucial part of keeping families and communities safe."
Fran Kritz is a health policy reporter based in Washington, D.C., who has contributed to The Washington Post and Kaiser Health News. Find her on Twitter: @fkritz
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