More Than a Silent Epidemic: Lack of Health Literacy Is Blocking Patient Access

Health literacy has been a pain point in healthcare since the beginning of the 21st century. And the issue has intensified for physician practices, hospitals, and patients due to the COVID-19 pandemic. 

Recent findings demonstrate that low health literacy has numerous negative consequences ranging from monetary impacts to mental and physical health effects. Since health information has become almost exclusively digital, health information (HI) professionals have an important role in empowering patients on their health literacy journey by organizing and presenting a patient’s health data in a way that best fits their health literacy level. 

A patient’s ability to comprehend and make health-related decisions based on their health data is critical to maintaining Health Insurance Portability and Accountability Act of 1996 (HIPAA) patient access compliance and meeting the 21st Century Cures Act. However, simply providing patient access to data is not sufficient. Patient data not presented in a way that is meaningful and easily understood is a disservice to patients, as the ramifications of a lack of health literacy can be felt throughout every aspect of healthcare. 

Therefore, it’s important to start from the beginning to understand the meaning of health literacy and the multiple layers involved. 

What Is Health Literacy?  

According to the National Library of Medicine, health literacy involves the information and services that people need to make well-informed health decisions. Health literacy is broken down into personal health, organizational health, digital health, and numeracy literacy. 

Personal health literacy involves a patient’s ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. Examples of personal health literacy include understanding a physician’s directions and consent forms. 

Organizational health literacy refers to the degree to which organizations equitably enable patients to find, understand, and use information and services to make health-related decisions. Organizational health literacy includes providing correspondence in the appropriate language, reading level, and format. 

Digital health literacy is the ability to seek, find, understand, and evaluate health information from digital sources and use that information to solve a health problem. This includes patients having the ability to access their electronic health records (EHRs) and communicate virtually with their health teams. 

Numeracy (or quantitative) literacy refers to mathematical and advanced problem-solving skills that are needed in an increasingly data-driven society. This refers to a patient’s ability to properly take their medication. For example, instructions such as, “Take one capsule twice a day.” Patients often struggle with one or all aspects of health literacy.  

The following statistics show the prevalence of this problem in the US:

• An article in American Family Physician found that one-third of US adults, approximately 80 million people, have limited health literacy. The report highlighted how many physicians overestimate how much their patients comprehend information during a visit. The reality is that most patients only retain about half of the information verbally communicated to them during an inpatient visit or written in a handout.  
• The report also found that the average reading level among US adults is eighth grade, yet 75 percent of patient medical materials are written at the high school or college level.  
• Additionally, the National Library of Medicine found that 40 percent of patients with low health literacy reported feeling ashamed, and 19 percent of these patients never told anyone about their struggle. 

Studies have shown that low health literacy has been highly correlated with distrust of health information technology (HIT) and resistance to adopting these new tools. Participants in a Journal of Medical Internet Research study who reported feeling skeptical about HIT also noted having data privacy concerns. 

These privacy concerns have acted as a health literacy barrier and driven a wedge in the digital divide.  

The Cost of Low Health Literacy 

The consequences of low health literacy impact patients and the entire healthcare industry. Limited healthcare literacy in the US costs the healthcare industry $236 billion per year due to an increase in medical errors, illnesses, disabilities, loss of wages, and compromised public health. 

On top of the monetary cost, the effects can take a serious toll on the health of patients who suffer from limited health literacy. For example, Denver Health Medical Center reports that one in five patients who suffer from heart failure has low health literacy. Furthermore, low health literacy has been associated with a high prevalence of chronic health conditions such as heart disease, diabetes, strokes, and asthma. 

Health Outcomes Hinge on Health Literacy and Patient Access 

Legislation like the Centers for Medicare and Medicaid Services’ (CMS) Interoperability and Patient Access Regulation and 21st Century Cures Act are working toward a patient-centric approach that will provide patients with their health data whenever they need it and in a format they can best use.  

The intent of this regulation is to provide patients with better access to their healthcare information and allow them the control to make decisions on their treatment, provider or cost. If patients and caregivers are unable to properly understand the information provided and can’t act on it, then the goals of improving outcomes and lower costs will not be achievable.  

Even with the positive intent of these regulations, nothing replaces open conversation between patient and caregiver. Patients need to feel more comfortable speaking up when they don’t understand, and caregivers need to start from the perspective that their patient needs help understanding the information they are going to deliver. The more that caregivers begin to communicate in a patient-friendly way using “living room language” instead of medical jargon, the better. HI professionals can assist in the translation of patient-friendly language to technologies.  

Data Transparency and Presentation Improve Health Literacy 

Data transparency provides a step toward bridging the health literacy gap among patients. Such transparency pulls back the curtain on the data collection process and gives patients insight into how their data is being used. The data transparency process includes letting the patient know why their data is needed, how it is collected, where it is saved, and how it is protected.  

Data transparency improves health literacy by building trust with the patient and allowing them to take a more collaborative approach. Giving patients the ability to correct any inaccuracies empowers them to take an active role in the formulation of their EHR. This involvement helps patients better understand the data-gathering process and, as a result, improves their health proficiency.  

The way in which a patient’s data is presented can make a difference in how well they understand the information and their willingness to embrace HIT platforms. Platforms with recognizable interfaces will be critical to making sure patients adopt new solutions. For the best results, these systems should resemble other applications patients already use, such as their banking applications. Additionally, having patient tools such as online appointment scheduling or patient education interact with the patient portal will be imperative to consolidating the experience and minimizing confusion for patients. 

As healthcare continues to embrace digitization, it’s critical to make sure that patients from all backgrounds are the focus of these solutions. Collaboration across the healthcare industry from healthcare technology development to patient care delivery will be a necessary ingredient for change. 

HI professionals have an opportunity to bridge the gap in health literacy by not only focusing on the quality of the data, but also prioritizing how this data is organized and communicated to best serve the patient. Being mindful of patients with various levels of health literacy and including them in the data gathering process will break down barriers and ultimately lead to accomplishing the healthcare ecosystem’s collective goals to improve patient care and reduce costs.

Doreen DeGroff is a senior director at CereCore, where she leverages her over 30 years of healthcare experience to provide expertise on health information technology (HIT) and services. DeGroff is MEDITECH Ready Certified as a revenue cycle lead, HIM, and project management.