Fifteen years ago, as a freshman in college, Akeia Blue received a diagnosis. It wasn’t until years later, and only after completing a Master’s in Public Health and writing a paper on the condition, that she was able to fully understand the diagnosis, simply because there was never a doctor who took the time to explain the diagnosis to her in a way she understood.
Health literacy, or a lack thereof, is a problem that affects nine out of ten adults in the United States, rendering them unable to make informed decisions regarding their health status. According to the National Library of Medicine, health literacy can be defined as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions.”
Among the individuals who are impacted by a lack of health literacy, some groups are disproportionately affected. These groups include individuals with low incomes, individuals with lower educational attainment and individuals for whom English is not a primary language. Also included are adults ages 65 and over, who represent the largest group of adults in the United States with limited health literacy skills.
A 2008 study assessed the effects of health literacy on health status in the elderly population, exploring factors such as health literacy and utilization of medical services. The results of the study showed that a higher degree of health literacy was linked to a higher self-rated health status, meaning that individuals who were more health literate believed they were in better health than those who lacked literacy. Ultimately, findings of the study suggested that improving health literacy can be a direct way to improve perceived health status and decrease the number of emergency visits for the elderly.
“[The way in which] many patients are interpreting [doctor’s] instructions, which most of the time are completely unclear, is actually dangerous to their health outcomes,” said Nancy Wongvipat Kalev, the Director of Health Education, Community Health & Wellness and Cultural & Linguistic Services at Health Net.
Another more recent study determined the link between health literacy and health outcomes for patients suffering from heart failure. The longitudinal study followed adults hospitalized for cardiac arrest and failure over a two year period, and assessed various comorbidities resulting from their initial condition. The conclusions of the study indicated that deficiencies in health literacy can severely impact health outcomes and even serve as risk factors for rehospitalization in patients.
Despite these studies and the immense evidence that health literacy is an important determinant of health outcomes, it continues to be a problem affecting many adults in the nation.
Blue, who now works as a Health Communications Consultant at Be Health Literate, explains that this problem arises from the very nature of how the healthcare system is set up. “Unfortunately, doctors just don’t always have the time to sit in the room with us, so they might not think to slow down and see if you have any questions, or confirm that you actually understand the instructions that they’re given you. Then you see patients who don’t know how to take their medicine and so they end up in the emergency room because they missed a dose or because they overdosed.”
In 2012, a comparative study was conducted to determine the readability of many health information documents. After the analysis of 185 medical guides on various topics and specialties, the average reading level of the documents was found to be at a 10th or 11th grade literacy level, whereas the mean reading level in the United States is closer to 7th grade. As a result, current informational guides are of little use simply because the language used is too complex for the majority of patients to understand.
“It’s incomprehensible the way many providers and documents are explaining things, there’s almost no point,” Kalev said.
At Health Net, Kalev and her team have worked towards combating this problem through making all member communications, both verbal and written, at a maximum of an eighth grade reading level.
In addition the readability and comprehensibility of information, source of information is another extremely important factor to consider when looking into health literacy. Blue defines health literacy to be “how we receive, interpret and act upon health information,” placing an emphasis on the importance of the first step. By not getting information from reliable sources, patients may make misinformed decisions without even realizing it.
In spite of these barriers to health literacy, a number of measures are being taken to work on improving the state of health literacy in the nation. The United States Department of Health and Human Services launched the National Action Plan to Improve Health Literacy with the goal of spreading “accurate, accessible and actionable” health information, through working with public and private healthcare professionals on patient communication techniques.
While these initial steps have been taken, mandating policies that require providers to undergo the training necessary to be able to communicate more effectively with patients about their health would benefit health literacy initiatives.
“As a business, it really helps when regulators, whether it be Covered California or DHCS [Department of Health Care Services] or CMS [Centers for Medicare & Medicaid Services], say that you have to do this as a part of your contract,” Kalev said. “And we’ve been able to see provider settings that have some of the best practices in place, and it’s completely turned around any misuse of medication or unattended consequences.”
Kalev’s team at Health Net created a partnership with the Fielding School of Public Health to launch the T2X program, which targets teens through the creation of a social media site focused on improving health literacy.
“We came up with a proposal to target young people, really between the ages of 12 to 17 or 18 because as the future users of health insurance, they need to know how to navigate the healthcare system [and] know their rights and responsibilities,” Kalev said.
As part of the program, they created a partnership with a college theater group at California State University, Los Angeles, where the group created health-related scenes about rights and responsibilities. “It was a really cool dynamic that actually made it fun and engaged young people to really take the steps to learn about their health,” Kalev said.
Additionally, a number of smaller organizations are also focused on helping to spread health literacy.
“There are a lot of organizations that are really trying to take the time to make sure that the materials they’re providing to patients are following [plain language] guidelines and are written in a way that patients can understand,” Blue said. As the founder of Be Health Literate, her organization is among these, working to educate students on the importance of literacy and cultural competency.
In addition to putting together health information to spread to nonprofits and their members, Blue focuses on working with the organizations that specifically help minority groups.
“It’s really about how can I reach organizations that are trying to direct messages to the black community, and to people of color, because I do think that we often get swept under the rug in communications that come out from the larger healthcare organizations,” she said.
In the end, it’s up to individuals taking the initiative to access the information that is available to them. The first step in solving the problem of health literacy is to acknowledge that while you may not understand your healthcare options immediately, it’s important to ask the clarifying questions to be able to then understand the different paths you can take.
“When it comes to being health literate, we all have different goals, but it’s always important to be comfortable with asking the right questions,” Blue said.