Authored by Anjali Anbu
Art by Nava Lippman
In discussing literacy-based barriers to healthcare, it's often assumed that writing in “simple,” less technical language is enough to make medical care accessible for all English speakers. However, this assumption ignores the estimated 21%, or 34.9 million Americans, considered "functionally illiterate" by the National Center for Education Statistics (NCES) [1]. The Organization for Economic Co-operation and Development defines functional illiteracy as an inability "to successfully determine the meaning of sentences, read relatively short texts to locate a single piece of information, or complete simple forms" [1]. This impedes a patient’s ability to communicate a history, maintain compliance with medications, and schedule follow-up appointments. However, unlike the common definition for illiteracy—the inability to read or write—functional illiteracy is unique in that many people are not aware they have it. The American Disabilities Act requires healthcare providers to make “reasonable modifications” to accommodate people with registered disabilities. But what accommodations exist for this growing percentage of Americans who face barriers without a registered disability?
Despite impacting a sizable percentage of the population, functional illiteracy is under-addressed by medical systems to the detriment of commonly underserved populations. Studies on health literacy have found that like other barriers to receiving quality care, low health literacy disproportionately impacts older adults, as well as racial and ethnic minorities [2, 3]. Low health literacy is also associated with a variety of poor health outcomes, including diminished overall health [4], lower adherence to treatment [5], greater cost of healthcare [6], and increased odds of remission or medical emergency within the 30 days following treatment [7, 8]. Despite these connections, the medical system remains inaccessible for people with low literacy rates as providers continually overestimate patients’ comprehension of care and treatment instructions [9]. Intake, referral, treatment and outtake forms still involve moderate amounts of jargon-heavy reading [10], and patients’ healthcare suffers as a result.
If all of this is true, why hasn’t there been a large-scale effort to make interacting with the medical system more accessible for patients of all levels of literacy? There are a number of complexities unique to communicating healthcare that are relevant here. Firstly, communicating medicine requires a high level of both specificity and comprehension. Increasing comprehension by utilizing more general language makes it more difficult to communicate everything doctors need to get across, which can diminish healthcare outcomes. Secondly, the wide spectrum of ability associated with functional illiteracy makes it difficult to accommodate everyone with a singular proposal. These twin difficulties pose significant challenges to the creation of a one-size-fits-all solution to functional illiteracy.
Regarding existing solutions, the evidence behind many commonly-used interventions seems to yield mixed results. Simply changing the language to a 6th grade reading level, one of the most commonly suggested alternatives suggested by Allen-Meares et al. (2020), fails to address the sector of the population that has a lower reading level than grade 6 [2]. This solution also fails to alleviate barriers for the growing sector of the population that can technically read above a grade 6 level, but are unable to actually comprehend or recall the information in the text [11]. Similarly, the shift to the digital patient interface and data storage network has been widely applauded as a more accessible alternative to paper forms. Patients can now look up terms that they do not understand, see their data and test results from home, and access details about their appointments from outside the office. But increased access to patient care information isn’t equal for everyone: Sarkar et al. (2010) find that racial or ethnic minorities, lower-income patients, patients with lower levels of education, and, critically, patients with lower level of literacy are all significantly less likely to access and effectively use these technologies [12].
So how can we address the barrier of illiteracy in the healthcare setting, if not through simpler language or digital access to data? The answer might lie in the way providers approach the “presentation” of health information in the first place: not as a presentation, but a cooperative practice. Written materials are not accessible to everyone, and while we shouldn’t stop using them, it’s clear that there are difficulties associated with making written materials the sole method of communication. Oral communication is not a catch-all solution to this either, as patients might recall only about half of the information a physician verbally conveys [13]. Instead, change must happen on the level of comprehension, hinging on effective communication between patients and doctors. Schillinger et. al (2003) finds that doctors rarely check if patients understand what they have been told via active recall, missing a key opportunity to bolster understanding. Changing the method of communication of treatment information into a mutual exchange between doctors and patients, with both checking for comprehension from the other, may be a strong proposal for improving comprehension despite low literacy rates.
Issues of treatment compliance and dissent towards medical staff have continuously been cited as failings of individual patients. However, fault cannot entirely be laid on the shoulders of patients when institutional barriers to comprehension, alongside other barriers to care, continue to exist for wide swaths of the population. More research into potential interventions, explored alongside advocates and members of the communities where these interventions will be deployed, are necessary to create the support that patients deserve. (874 words)
Works Cited
[1] Institute of Education Sciences. (2019, July). Adult literacy in the United States. National Center of Education Statistics. https://nces.ed.gov/pubs2019/2019179/index.asp
[2] Allen-Meares, P., Lowry, B., Estrella, M. L., & Mansuri, S. (2020). Health Literacy Barriers in the health care system: Barriers and opportunities for the profession. Health & Social Work, 45(1), 62–64. https://doi.org/10.1093/hsw/hlz034
[3] Rikard, R. V., Thompson, M. S., McKinney, J., & Beauchamp, A. (2016). Examining health literacy disparities in the United States: A third look at the National Assessment of Adult Literacy (NAAL). BMC Public Health, 16(1). https://doi.org/10.1186/s12889-016-3621-9
[4] Sentell, T., Zhang, W., Davis, J., Baker, K. K., & Braun, K. L. (2013). The influence of community and individual health literacy on self-reported health status. Journal of General Internal Medicine, 29(2), 298–304. https://doi.org/10.1007/s11606-013-2638-3
[5] Zhang, N. J., Terry, A., & McHorney, C. A. (2014). Impact of health literacy on medication adherence. Annals of Pharmacotherapy, 48(6), 741–751. https://doi.org/10.1177/1060028014526562
[6] Palumbo, R. (2017). Examining the impacts of health literacy on healthcare costs. an evidence synthesis. Health Services Management Research, 30(4), 197–212. https://doi.org/10.1177/0951484817733366
[7] Mitchell, S. E., Sadikova, E., Jack, B. W., & Paasche-Orlow, M. K. (2012). Health Literacy and 30-day postdischarge hospital utilization. Journal of Health Communication, 17, 325–338. https://doi.org/10.1080/10810730.2012.715233
[8] Griffey, R. T., Kennedy, S. K., McGownan, L., Goodman, M., & Kaphingst, K. A. (2014). Is low health literacy associated with increased emergency department utilization and recidivism? Academic Emergency Medicine, 21(10), 1109–1115. https://doi.org/10.1111/acem.12476
[9] Dickens, C., Lambert, B. L., Cromwell, T., & Piano, M. R. (2013). Nurse overestimation of patients’ health literacy. Journal of Health Communication, 18, 62–69. https://doi.org/10.1080/10810730.2013.825670
[10] Roter, D. L. (2011). Oral literacy demand of Health Care Communication: Challenges and Solutions. Nursing Outlook, 59(2), 79–84. https://doi.org/10.1016/j.outlook.2010.11.005
[11] OECD. (2013). OECD Skills Outlook 2013. OECD Skills Outlook. https://doi.org/10.1787/9789264204256-en
[12] Sarkar, U., Karter, A. J., Liu, J. Y., Adler, N. E., Nguyen, R., López, A., & Schillinger, D. (2010). The literacy divide: health literacy and the use of an internet-based patient portal in an integrated health system—results from the diabetes study of northern California (DISTANCE). Journal of Health Communication, 15, 183–196. https://doi.org/10.1080/10810730.2010.499988
[13] Scherwitz, L., Stewart, W., McHenry, P., Wood, C., Robertson, L., & Cantwell, M. (2003). An integrative medicine clinic in a Community Hospital. American Journal of Public Health, 93(4), 549–552. https://doi.org/10.2105/ajph.93.4.549
[14] Schillinger, D., Piette, J., Grumbach, K., Wang, F., Wilson, C., Daher, C., Leong-Grotz, K., Castro, C., & Bindman, A. B. (2003). Closing the loop. Archives of Internal Medicine, 163(1), 83. https://doi.org/10.1001/archinte.163.1.83