America’s Healthcare Literacy Problem (and How We Might Fix It)

Posted December 12, 2016
By Annie Gallagher

Millennials catch a lot of flak about their usage of phrases and acronyms—lol, wtf, omg, fomo, nsfw, af, tbh, etc. IMO, the only group of people using more confusing jargon are those in the healthcare industry.

If you haven’t worked in healthcare (let alone healthcare tech), why would you take the time to learn acronyms like C-CDA, HHS, MABP, CDC, EMR, CMS, HIE, PHI, Epic, EHR, HITECH? Trick question—Epic isn’t even an acronym, and there’s a decent chance you had no idea that was the case.

Typically, we think of healthcare as the hospitals, doctors, nurses, insurance companies, and labs that comprise large health systems, but we often forget the fundamental reason these things exist—the patient. The problem with healthcare’s use of acronyms and non-inclusive language is that they’re not accessible to the people who are most often implicated in their care, creating an unfortunate gap between what patients need to understand and what they can understand. 

Title V of The Patient Protection and Affordable Care Act of 2010 defines health literacy as: “The degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.”

Unfortunately, even individuals who have strong literacy skills may struggle when it comes to understanding health information such as:

A Problem of Epidemic Proportions

In 2006, the National Assessment of Adult Literacy (NAAL) published the only national study to date on adult health literacy, finding that only 12% of U.S. adults had proficient health literacy. More than a third of U.S. adults—a whopping 77 million people at the time—would have difficulty with common health tasks such as following directions on a prescription drug label or identifying what is permissible to eat or drink prior to a medical test. The remaining 52% had intermediate skills and would, for example, be able to understand when a medication should be taken based on the instructions such as “take two hours after eating”.

While we wonder why only 50% of patients with chronic diseases take their medicine as prescribed, we continue to ignore the fact that most health information is written at or above a 10th-grade reading level—while the average American reads at or below an 8th-grade reading level. Further compounding the problem are the individuals whose first language is not English. The health implications of this lingual disconnect at the center of nearly every care interaction are absolutely mind-boggling.

Regardless of literacy skills, patients are expected to manage complex chronic diseases, understand medication administration directions, follow immunization schedules for their children, and be their own health advocate (among other things). That alone is a lot, and it’s easy to see where things can begin to go awry when patient care becomes more complicated. 

Where Do We Go from Here?

So, who is responsible for solving this problem? Many believe the responsibility lies with public health professionals and health systems. Others think it’s the job of the patient to ask more detailed questions or educate themselves when they don’t understand. It’s not enough to ask patients if they understand information because chances are they’ll say yes whether or not this is the case, nor is it fair for the patient to shoulder the responsibility of asking probing questions because they are operating at a knowledge deficit.

So how can we ensure critical information is not lost in translation? How do we help patients who might feel shy or embarrassed ask the necessary questions so they truly understand the information that has been given to them? How do we help providers know, without a doubt, that their patients understand the extent of the diagnosis or instructions they have outlined?

Healthcare information needs to be more accessible and understandable for patients, and the way to do that is through technology.

We’ve seen incredible groups like NowPow take the confusing mess of health resources available to low-income patients and create an easy to decipher “e-prescription” that clearly outlines the services closest to that patient and how to take advantage of them based on the patient’s unique needs. What are other good examples of technology companies tackling this health literacy problem?

We’d love to learn more and feature the work they are doing so let us know if there are any groups we should be aware of. In the meantime, we’ll be closely tracking advancements in this space and sharing them with you all.