Health Literacy in Primary Care: Reflections and Suggestions for Physicians,Researchers,and Administrators

Abstract

As the healthcare system evolves, it is becoming more complicated for physicians and patients. Patients might have had one doctor in the past, but now are likely to regularly see several specialists along with their primary care physician. Patients can access their health records online, which increases transparency and accountability, but adds more information they have to interpret. This is the concept of health literacy—the ability to obtain, process, and act upon information regarding one’s health. This article will characterize health literacy in primary care and provide three areas that primary care physicians and researchers can direct their focus in order to increase health literacy among patients: community engagement, trainee education, and examination of personal bias.

… Primary care physicians are in a unique place to address health literacy …

Health literacy is in every aspect of health care, every specialty, every interaction with the insurance industry, and beyond. Efforts to improve health literacy are critically important, as a 2003 national assessment of adult literacy found that 36% of American adults had Basic or Below Basic Health Literacy. ¹ In addition, low health literacy has been linked to lower cancer screening and vaccination rates, increased use of the Emergency Department, increased morbidity and premature death, and decreased medication adherence. ¹

Given the ubiquity and implications of poor health literacy, efforts have been made to measure it and intervene to improve it. Assessments have ranged from simple literacy and numeracy tests to asking patients to read and interpret scenarios. ² While early definitions of health literacy focused on literacy and numeracy, so did the assessments, such as Rapid Estimate of Adult Literacy in Medicine and Test of Functional Health Literacy in Adults (TOFHLA). ¹ Newer tools have been developed that are specific to certain healthcare situations, like understanding shared decision making around cancer screening. ³ These tests have limitations, as implementation is not always practical in a primary care setting. Even the short version of the TOFHLA (10 minutes) would take too long during a typical visit (scheduled every 15–20 minutes, on average). In addition, there is a concern that assessing patients’ literacy and understanding might make them feel ashamed; limited clarity from current evidence that assessment itself leads to improved health outcomes, thus it is not recommended in routine care.^1,2

Health Literacy in Primary Care

While the definition of health literacy and tools to assess it range widely, the interventions that have been studied are more limited, with most focusing on educational modules for patients. Studies analyzed in a recent systematic review provided interventions for specific diseases and involved enrolling patients in week-long courses with sessions over an hour in duration. ⁴ Most of these studies showed improved outcomes, ⁴ but enrolling patients in time-intensive courses on chronic disease is not a realistic approach in a primary care setting. Patients often have multiple conditions and enrolling them in courses for each one would be a time commitment most could not make. Because the data on screening for an individual patient’s health literacy in a primary care setting are not convincing and practical constraints make interventions like those listed above difficult, the current recommendation is an approach called the Universal Precautions Toolkit—proposed by the Agency for Healthcare Research and Quality and geared toward a primary care setting. ¹ Universal precautions assume that every patient in every encounter is at risk for low health literacy, practitioners should avoid making assumptions about a patient’s health literacy level in any given circumstance, and certain guidelines for communication should be used for everyone to minimize the possibility of misunderstanding. ² Communication tools recommended include teach-back (having the provider ask the patient to repeat back the instructions to ensure understanding), limiting key topics addressed in a visit to three, and showing numerical data in easy-to-read visual form. ¹

While the goals of the Universal Precautions Toolkit are admirable, these efforts do not address the full scope of health literacy. Health literacy is not just understanding the medical condition—it is understanding the medical issue, applying that knowledge to healthcare decisions, knowing where to look for more information, and navigating a healthcare system that has ever increasing complexity. We suggest three areas: community engagement, trainee education, and examination of personal bias that primary care, that physicians, researchers, and leaders need to consider when working to address literacy needs.

Suggestion 1: Engage the Community

Health literacy was initially understood as a patient’s ability to understand medical knowledge in regard to their own health, but over the decades, health care and research communities have acknowledged that health literacy is part of a larger social determinant of health. There is an understanding of health literacy as a medical term and as a public health term, but few studies have looked at the connection between the two and how addressing it as a public health concept might affect the medical concept. ⁵ One of the limitations of the interventions used and studied so far is that they require the patient already be interacting with the system. A community-based approach to interventions would help catch people who are not interacting with the system on a regular basis. In the Philadelphia area, several health systems have begun that work and joined together to try to address the varied aspects of health literacy, specifically around cancer screening, through a multi-pronged approach. Southeastern Pennsylvania Regional Enhancements Addressing Disconnects (SEPA-READS) works to improve health literacy through use of peer educators in the community, educating healthcare professionals on low health literacy and strategies to combat it, and designing visual aids and patient education materials accessible for patients. ⁶ SEPA-READS and other organizations continue to explore innovative and creative approaches to the issue of improving health literacy.

One of the first steps to improving health literacy is to understand how patients are getting their information. One recent study in 2018 found that while different levels of health literacy did not correlate with different levels of trust in primary care physicians, lower health literacy did lead to more distrust of information from specialists and dentists. ⁷ It also noted that patients with lower health literacy were more likely to use other sources (TV, celebrities, and social media) for their health information. ⁷ Community-based interventions should take these factors into consideration. Primary care offices and physicians could make connections with schools to start students interacting with health care early. Physicians could hold Q&As at gyms/YMCAs. Physicians could use social media platforms to disperse information in easily digestible formats. Health systems could set up booths at community events. Physicians could hold information sessions at homeless shelters. Any resource a patient might turn to for social services (eg, WIC and unemployment) could be linked with health services in an attempt to tackle low health literacy as a social determinant of health.

Suggestion 2: Teach Trainees

Most of the research on health literacy has focused on patients and individual education, but perhaps the attention needs to be turned to practitioners instead of patients. Recommending universal precautions is a good idea in theory, but not if those tasked with using it do not understand health literacy concerns and certain communication skills. Often physicians are either unaware of health literacy constructs or lack confidence in their ability to address issues around health literacy. ² SEPA-READS, as noted above, has offered to train to physicians, but education in health literacy could and should start before physicians are practicing in the community. It is no wonder that physicians lack confidence in their grasp on health literacy given that few medical schools and residency programs incorporate health literacy in their curricula. ⁸ Training in health literacy and communication should start from the beginning of medical education so it becomes second nature. Medical students have sessions on ethical principles and social determinants of health, thus providing a natural place to integrate a curriculum on health literacy.

Suggestion 3: Examine Bias

What the prior approaches have in common is increasing trust between physicians and patients, bridging the gap between medical jargon and patients’ understanding of their health, and demonstrating that the physician’s goal is to do what is best for the patient’s health. Patients with low health literacy often come from groups that have been marginalized–immigrants, those living below the poverty line, those who speak English as a second language, and people of color. ¹ They have been mistreated, used, and abused by the system both in the past and present. Healthcare professionals need to reach patients on platforms they trust and communicate in ways that allow for patients to ask questions and get the information they need. Instead of asking why a patient is not taking their medication properly, ask what are the patient’s barriers to taking the medication? What is the patient’s understanding of their medication, their disease, and how it might be affecting their everyday life? How are the socio-economic and political systems designed to make it harder for this patient to access healthy choices?

While the goal of improving health literacy is to improve health outcomes, it has the benefit of empowering patients to make their own decisions. Opening lanes of communication between patients, providers, medical assistants, office staff, community health workers, social workers, and case managers; making sure the patient does not feel judged when asking for clarification; and normalizing a back and forth between patients and providers give patients confidence in their medical care. Establishing relationships between primary care offices and community spaces (schools, gyms, libraries, social services offices, and online platforms) would allow providers to understand the world their patients occupy. The visibility of physicians outside the office could make patients feel like the physicians are not just sitting behind computers dispensing medical advice without consideration. Communication with individual patients and communication with communities builds trust.

Conclusion

While measuring the health literacy of every patient in every visit has not been shown to improve health outcomes, that does not mean that addressing health literacy in every visit or patient-interaction cannot improve health outcomes. Primary care physicians are in a unique place to address health literacy as we are often the first contact people have with the healthcare system, thus we must change the way we individually interact with patients and change the way the healthcare world interacts with communities to see short- and long-term health improvements.