Improving Health Literacy in At-Risk Communities

By Ryan Bosch, MD

The COVID-19 pandemic has illuminated significant healthcare deficiencies that have plagued the United States and its most vulnerable patients for decades. Arguably, the most important shortfall amplified during this national health emergency is that we, as a country, are failing at health literacy.

Health literacy is defined as the ability to obtain, read, understand, and use healthcare information in order to make appropriate health decisions and follow instructions for treatment. A recent study showed that more than 290 million Americans are less than proficient in health literacy. To understand the impact and magnitude of poor health literacy on the U.S. economy, it costs the healthcare industry between an estimated $106 billion and $238 billion per year – which is approximately 7% to 17% of all personal healthcare expenses.

At-risk communities have long struggled with health literacy because of an inability for providers to deliver patient and disease education in a culturally competent manner. For years, there has been an absence of a relationship-based patient care model, which is the provider’s ability to understand, listen and forge a bond with a patient. A trusted relationship between provider and patient is a mutual effort, one that puts social risk and cultural risk – not just healthcare risk – into context. The health of a patient and population is about the whole view, which includes clinical and social factors for optimal health and better outcomes. Health literacy improves when the social and clinical context of a person’s situation is taken into account. Having both access to health information and a trusted relationship to guide choices ensures better outcomes. As such, health literacy does not just take into account an individual’s community, but also a person’s nativity, education, and language spoken at home when delivering information. 

The U.S. experiences some of the poorest health outcomes and some of the lowest levels of health literacy when compared to other developed countries. However, progress towards proficiency in health literacy can be advanced by completing the following steps.

Determine a Patient’s Ability to Access Information and Receive Guidance to Process Information

Providers must first ensure the necessary data and information is available and attainable for a patient, and that there is proper guidance and support on how to process it. Is there a digital divide preventing access to broadband internet or a smart phone? Are there case managers available in the community, and if so, what is the frequency in which they can provide support services? As a patient, are you scheduling and attending regular appointments with a healthcare provider? What is the community level of social risk at baseline that creates barriers to accessing information and support in healthcare decision making? Answering these questions and developing a deeper understanding of the gaps to better literacy will foster a stronger foundation for improved health.

Verify the Patient Comprehends and Understands Information

Once the patient receives the information, the next step in the health literacy life cycle is to confirm they have an understanding of what it means. Comprehension obstacles, such as education level, cultural influences, and primary language, may present themselves and can be addressed through the application of community resources and provider-supported, relationship-based care. At an individual level, simplifying the communication, putting it in writing (fifth grade education level), asking the patient to repeat the information back with a frame of reference, and monitoring their non-verbal cues are simple methods to affirming the information is understood. At a community level, understanding the contours of social risk, such as food insecurity, housing instability, transportation, economics, and social isolation – all of which impede community-based health programs – is key. And with that understanding, providers must then help patients navigate through the basics of disease awareness and compliance with a treatment plan and/or medications.

Provide Cultural Context to the Information

First, diseases do discriminate, and it is imperative for providers to possess the ability to communicate the clinical information with social and cultural context to the individual and culturally at-risk group. Cultural context is different for each patient and community, and it is what most often leads to reduced empathy and trust. These are the first steps to advancing community-based health literacy. Providers and community programs must listen to the social and clinical context of the disease in the community and put the risk in cultural context. Then, patients can hear the information and understand what it means to them and their loved ones. Vulnerable communities must always consider how the disease impacts the community’s capacity to advance its own health outcomes. 

Offer Support in Making the Right Decision

Healthcare is not a medical dictatorship and the direction a patient decides to pursue with their health is volitional. Patients ultimately choose whether or not they will take prescribed medication, seek treatment for chronic conditions or elect to pursue recommended surgery. The role of the provider is to determine if the patient has the capacity to make the decision – meaning can they employ all parts of the health literacy life cycle to make an informed determination at the present moment. If the patient has the capacity, it is up to the provider to support the decision that is appropriate for the patient and their particular circumstance. As a physician, trained in treating not just the clinical needs of my patients but also their social needs, it is critical to support the community around a person as they make decisions about care choices. We know that communities with access to information and higher health literacy provide for better individual health and healthcare decision making. Individual autonomy always wins out, but community-supported and informed autonomy is the ideal. 

People don’t want to just take medicine; they want to be cared for. That is the difference between healthcare and health. People and our communities deserve optimal health. Patients frequently disregard medications because they don’t understand the why and are not comfortable enough to ask the provider – let alone ask for a second opinion. They are uncertain of what the outcome the prescribing provider is seeking. This results in approximately 50% of all prescriptions written by providers never being taken.

The COVID-19 pandemic did not materially worsen health literacy in the U.S. in 2020, yet it cast a spotlight on the effects social and cultural disparities in a health crisis of any proportion will have on care and outcomes. These foundational and root cause topics must enter the national discussion. In quantifying the impact impaired health literacy will have on future generations, the cost of our present-day failures is much closer in range to $1.6 trillion to $3.6 trillion if we fail to act than the current over $100 billion present day impact. 

Health literacy cannot be improved at scale on a one-on-one basis. To move the needle, experts in the social determinants of health must leverage full-scale social analytics to match market resources with community needs. This will provide caregivers information to develop strategies on a personal and community level that are proactive and delivered to the populations with the greatest needs. This approach can be applied to other social determinants of health – not just health literacy – including food insecurity, housing, transportation and economic wellbeing. There is an opportunity for improvement right now, and if we aren’t thoughtful about how to solve the problem, scale the solution and grow it, the physical and financial ramifications of our inaction will reverberate for generations.

Dr. Ryan Bosch is president and co-founder of Socially Determined, the social risk analytics company for organizations committed to addressing the Social Determinants of Health (SDOH), and is also a practicing physician in Reston, Virginia. In previous roles, Dr. Bosch has built healthcare IT businesses, and advised and served as CMIO for health systems. He was also director of the division of internal medicine at The Gorge Washington University and achieve the rank of Major as flight surgeon in the United States Air Force.