Help patients make sense of complicated health information when the stakes are high

December 1, 2020 - by Aisling Carroll

Health literacy had a star-studded moment when Saturday Night Live (SNL) recently covered the topic.

Of course, SNL didn’t say “health literacy” a person’s ability to find, understand and use health information — but one character squirted hand sanitizer into his mouth and slapped it on his neck like aftershave. Another sipped a martini declaring she already had her vaccine.

Unfortunately, these jokes weren’t wild fabrications. Due to people perilously ingesting disinfectants like Lysol, the CDC issued warnings in April about how to use them safely. The following month, tackling another unfounded rumor that was gaining traction, the National Institute of Health announced that “drinking alcohol does not prevent coronavirus.”

Health care systems have also played a leading role in curbing the spread of misinformation about COVID-19. They also have developed a library of evidence-based advice to address patient concerns and keep them safe.

Indeed, an unheard of number of patients are seeking clarity in uncharted medical territory. In the first two months of COVID-19, as well as swamping health care systems’ call centers, patients sent 285 percent more text messages with questions and inquiries to WELL’s customer base.

Many organizations have provided patients with everything from texts about what symptoms might signal COVID-19 and how to get tested to doctor-authored blog articles about how to prevent the coronavirus to Facebook Live events and emails about the safety of coming in for a colonoscopy or a child’s vaccination.

But do patients understand this information? The numbers don’t bode well. When health literacy was last measured nationally, nearly 90 percent of respondents were identified as having low health literacy, as detailed in the 2003 National Assessment of Adult Literacy study.

Who has low health literacy? Hint: it might be you

According to Dr. Danielle Ofri, an internist at Bellevue Hospital and Clinical Professor of Medicine at New York University School of Medicine, limited health literacy is “especially common in those who have the most diseases and the fewest resources.”

It’s also common in older adults and those who have low education levels and low general literacy skills, such as written language and basic math.

But they are far from the only ones. As a college-educated, native English speaker (who is a health care writer!), I could not make sense of a chemotherapy brochure that stated, “Fatigue is not relieved by rest.”

Confused by this stand-alone statement – doesn’t rest recharge you? – I was unable to use this information to take a specific action to feel better. By definition, I was a textbook case of demonstrating low health literacy.

Less understanding = more unwell patients (and unhappy staff)

Many patients’ inability to comprehend or flat-out misunderstand health information can have much graver consequences. A 2020 Journal of the American College of Cardiology literature review of 15 health literacy studies, which included heart failure patients, discovered just that.

“Our findings showed that an inadequate level of health literacy is associated with increased risks in mortality and hospitalization among patients with heart failure,” said Lila J. Finney Rutten, PhD, an author of the study and Professor of Health Services Research in the Department of Health Sciences at Mayo Clinic.

Limited health literacy is also associated with more ER visits and fewer mammograms and flu vaccines, according to a 2011 Agency for Healthcare Research and Quality report, as well as higher health care costs.

Call volumes and inbound text messages can also increase when patients have unanswered questions, as hospitals and systems experienced when COVID-19 hit. When patients are muddled about medicine, health care staff feels the brunt.

While it’s easy to put the burden of understanding health information on patients’ shoulders, Dr. Rima Rudd, a health literacy researcher at Harvard University, believes health systems need to do a better job explaining all things health related.

“Are our forms readable? Are the directions after surgery written coherently? If it’s written in jargon, with confusing words and numbers, you won’t get the gist of it and you won’t get important information,” Dr. Rudd told the New York Times.

Cognizant of the problem, some health systems have been moving away from dense, medicalese copy that can be hard to digest. Instead, they are embracing everyday words, short sentences, more white space and visuals.

For example, WELL customers have been able to deliver to their patients evidence-based, bite-sized videos and straightforward written materials on COVID-19 through WELL’s partnership with Wolters Kluwer. The partnership helps allay patient fears, provides clear direction on when to seek care and reduces the number of calls patients place to their providers.

And instead of sending this easy-to-understand information to a patient’s sometimes infrequently checked email address, physical mailbox or patient portal, WELL sends it by many patients’ preferred method: text.

“A communications emergency”

As COVID-19 flares across the country and misinformation continues to catch fire online, the stakes for people understanding health information and accepting a coronavirus vaccine could not be higher.

“A pandemic is as much a communications emergency as it is a medical crisis,” wrote members of the CONVINCE initiative, a global business coalition to advance vaccine literacy, in Harvard Business Review (HBR).

As more and more people say they will definitely or probably would not get vaccinated at this time (49 percent), according to a September 2020 Pew Research Center survey, governments, corporations and health care systems face a daunting communications challenge ahead.

Given the complex nature of vaccines, “literacy for COVID-19 vaccines will require more extensive efforts than many other health literacy campaigns,” according to the HBR article.

To build confidence in the coronavirus vaccine, health systems must tackle patients’ fears and concerns – from safety to “big pharma” – by creating the type of scientifically sound content (e.g., blogs, Facebook posts) that’s most popular with their patients.

Placing doctors front and center in YouTube videos and on podcasts might make most sense. In a recent October 2020 AP-NORC poll, the family doctor ranked highest when it comes to whom Americans trust for information about the coronavirus.

Health systems’ proactive communication measures could turn vaccine hesitant or hostile patients to vaccine accepting ones, decreasing their chance of contracting COVID-19. This outreach will also better buffer administrative staff from the crush of calls expected to roll in once the first vaccine is released. ♥

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