By Sherine El-Toukhy, Ph.D., M.A.
Earl Stadtman Tenure-Track Investigator & NIH Distinguished Scholar
Division of Intramural Research, National Institute on Minority Health and Health Disparities
A basic principle of effective communication is to know the audience.1 This principle is especially important for patient-provider interactions that involve risk and diagnostic information, preventive measures, and instructions on medication regimens. But a message said is not necessarily a message understood. A patient’s understanding requires an ability to deal with written and spoken word and a grasp of basic math skills and concepts.2 It requires a health literate patient.
As a researcher in the Division of Intramural Research at the National Institute on Minority Health and Health Disparities (NIMHD), I have been intrigued by how people of all races and ethnicities consume and understand health information and how this affects their health decision making and behaviors. Recently, I published a review of factors that affect the quality of patient-provider interactions among underserved populations.3 My co-author and I found that health literacy was prominent among other patient and clinician related factors.
Indeed, the link between health literacy and health outcomes is indisputable. 4 From self-reported health and health knowledge, to preventive behaviors, chronic disease management, and hospitalization, individuals with limited health literacy fare worse than health literate ones.4 Even more unsettling is that minority racial/ethnic groups, individuals who are socioeconomically disadvantaged, the elderly, and immigrants are disproportionally limited in their health literacy.4 Low health literacy exacerbates poor health outcomes associated with other factors such as limited English proficiency that burden these populations to begin with.5
Until recently, patients’ health literacy was simply presumed and sometimes overestimated.6 However, results of the National Adult Literacy Survey in the early 1990s revealed that almost 90 million Americans scored below the minimum threshold of basic skills deemed necessary to survive in an industrialized society. These basic skills include the ability to use written words and numbers in daily activities and problem solving.7 Three decades later, the numbers remain unchanged.8 These results were eye-opening because of their implications for healthcare.9
Although the thought of a patient mistaking a “stepping stool” for a laboratory “bowel stool” sample seems improbable, there is evidence to the contrary. Researchers have documented how limited health literacy patients misunderstand doctors’ instructions and drug labels.10, 11 As one patient put it, “Sometimes [doctors] come out with big words and I don’t know what to make of it … they don’t say stomach or belly, they say something else, abdominal … I don’t understand that.”12
Beyond patient-provider interactions, possessing the skills to seek and process medical and health information, communicate needs, and weigh available choices are prerequisites to quality patient-clinician communication, patient engagement in health decision making, medical adherence, and ultimately positive health outcomes.
Addressing low health literacy thus is a necessity.13 The question is how? Initially, low health literacy was characterized as a patient attribute. This risked the belief that, first, limited health literacy is not malleable, and second, if it were, this responsibility rested outside the healthcare system. Alternatively, a comprehensive approach to address limited health literacy encompasses, besides the patient, the clinician, the message, the channel, and the context. Example approaches include training medical students on health literacy; tailoring easy-to-understand, culturally and linguistically appropriate messages with creative content such as risk assessment charts, cartoons, and narratives; and using different user-centric channels, such as interactive digital platforms. Within a healthcare organization, identifying limited health literacy individuals in electronic health records and building feedback systems allows for appropriate allocation of resources based on patient outcomes and reduction of health disparities as performance metrics.1, 13
As the Institute tasked with improving minority health and reducing health disparities, NIMHD is committed to improving communications with diverse populations.3 An example of such efforts is the Language Access Portal that provides health information in seven languages in nine areas with significant disparities such as cancer and cardiovascular disease. The portal is a collaborative effort among the centers and institutes at the National Institutes of Health and other federal agencies to improve access of individuals with limited health literacy and English proficiency to health information.
With the emphasis on patient-centeredness, a health literate public, healthcare and public health organizations are ever so important.
- S. Department of Health and Human Services, National Institutes of Health, & National Cancer Institute. (2008). Making health communication programs work: a planner’s guide, pink book. Bethesda, MD: U.S Department of Health and Human Services.
- Ratzan, S. C., Parker, R. M. (2000). Introduction. In K. Patrias (Ed.), National Library of Medicine current bibligoraphies in medicine: health literacy (pp. v–vii). Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.
- Pérez-Stable E.J., El-Toukhy S. Communicating with diverse patients: How patient and clinician factors affect disparities. Patient Education and Counseling, 2018
- Kindig D.A., Panzer A.M., Nielsen-Bohlman L. Health literacy: a prescription to end confusion: National Academies Press 2004.
- Sentell Sentell, T., & Braun, K. L. (2012). Low health literacy, limited English proficiency, and health status in Asians, Latinos, and other racial/ethnic groups in California. Journal of Health Communication, 17(Suppl. 3), 82– doi:10.1080/10810730.2012.712621
- Kelly P.A., Haidet P. Physician overestimation of patient literacy: a potential source of health care disparities. Patient Education and Counseling, 2007; 66(1): 119-22.
- Kirsch, I. S., Jungeblut, A., Jenkins, L., & Kolstad, A. (1993). Adult literacy in America: A first look at the results of the National Adult Literacy Survey. Washington, D.C.: National Center for Education Statistics, Office of Educational Research and Improvement.
- The Organisation for Economic Cooperation and Development (OECD). United States – Country Note – Survey of Adult Skills – First Results 2013. Accessed September 24, 2018.
- Rudd, R. E., Moeykens, B. A., & Colton, T. C. (1999). Health and literacy: a review of medical and public health literature. In C. Smith (Ed.), Annual review of adult learning and literacy, Vol. 1 (pp. 158–199); Jessup, MD: Jossey-Bass, Inc., & Office of Educational Research and Improvement.
- Davis, T. C., Wolf, M. S., Bass, P. F., et al. (2006). Literacy and misunderstanding prescription drug labels. Annals of Internal Medicine, 145(12), 88– doi:10.7326/0003-4819-145-12-200612190-00144
- Wolf, M. S., Davis, T. C., Shrank, W., Rapp, D. N., Bass, P. F., Connor, U. M., Clayman, M., & Parker, R. M. (2007). To err is human: patient misinterpretations of prescription drug label instructions. Patient Education and Counseling, 67(3), 293– doi: 10.1016/j.pec.2007.03.024
- Jordan, J. E., Buchbinder, R., & Osborne, R. H. (2010). Conceptualising health literacy from the patient perspective. Patient education and counseling, 79(1), 36– doi:10.1016/j.pec.2009.10.001
- S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2010). National action plan to improve health literacy. Washington, D.C.: Author.