Written by Ned Zimmerman-Bence, Co-Founder of GogyUp

Standing is a pre-requisite skill for walking. Standing requires the development and engagement of core and leg muscles combined with proper integration of various conscious and unconscious cognitive processes and sensory systems; a complex feat. Yet if one does not learn to stand, developing the ability to walk becomes extremely difficult. Without the ability to walk, mobility is reduced with massive ramifications for a person's quality of life.

Literacy is similar to standing. In this instance we refer to "literacy" as the proficient ability to read and, specifically, the ability to decode and match letters and letter combinations (i.e., graphemes) to the specific sounds (phonemes) that form words. Although there are varying definitions for literacy, the OECD's definition seems to capture common points of other definitions:

Literacy is defined as the ability to understand, evaluate, use, and engage with written texts to participate in society, achieve one’s goals, and develop one’s knowledge and potential.

The key phrase in the OECD's definition is "develop one’s knowledge and potential".

The act of reading is a complex process, requiring the integration of learned cognitive processes with muscle movement, metacognition, and even hand-eye coordination. Unlike standing, it is a process that is explicitly taught. But like standing, proficient reading is a pre-requisite skill for developing knowledge across several domains including math, finances, civic life, science, technology and health. Proficiencies in these domains are often referred to as literacies as well: math literacy, financial literacy, civic literacy, science literacy, digital literacy, and health literacy.

Each of these domain literacies are necessary to develop skills and knowledge that allows adults to achieve "potential" to live a healthy and full life. They each share three common attributes:

1. Proficiency can be learned through a variety of instructional modalities: formal, informal, structured, unstructured, visual, kinesthetic, and auditory.

2. Proficiency in one literacy compliments the development of proficiency in others. For example, a proficiency in math literacy is clearly a foundational skill for developing financial, scientific, and health literacy.

3. Proficiency in reading literacy is a precondition for proficiency in other domain literacies.

Without reading literacy, it is difficult to capture, store, recall, and apply information to improve one's knowledge in these other domain-specific literacies.

Impact of Low Health Literacy

Health literacy is a prime example of reading literacy proficiency as a precondition for achieving a domain literacy because health literacy impacts every life and every family. Definitions of health literacy are used but there is a growing awareness that health literacy is not solely an individual characteristic but also has a community focus. For the purposes of this post, the focus will remain on the individual. A deep body of knowledge concerning the correlation between individual health literacy and health outcomes has developed over the past twenty-five years and the system's cost of low health literacy (LHL) is well known.

Individual LHL is defined by the U.S. Institute of Medicine as "a limited capacity to obtain, process, and understand the basic health information and services needed to make informed health decisions". LHL can lead to a lengthy chain of consequences for the patient including:

• Higher frequency of missed appointments;

• Reduced capacity for self-management skills resulting in reduced patient activation;

• Poor clinician-patient communication which results in less shared decision-making;

• Lower trust which can set off a cycle of worse quality of care and increased chances of medical error and patient safety events.

LHL in individuals sets off a chain of consequences that impact families and society, including increased rates of hospitalization, premature morbidity, co-morbidity and mortality. LHL's costs include the obvious such as greater utilization of expensive treatments, staff, and resources. Less obvious costs include missed income generation for families, lost work productivity for businesses, and lower economic growth for the economy. The greatest cost is the psychological toll on the patients and their families who live in poorer health and reduced economic circumstances, and could face declining quality of life due to lower capacity to manage their disease.

The LHL Crisis

Illness in a LHL individual can quickly create a crisis for that individual or family. Widespread LHL in society can create both a public health emergency and an economic crisis. Given that 1 out of 6 U.S. adults are not functionally literate and another 64 million adults have only basic literacy proficiency, it is alarming but no surprise that 33% to 50% of the U.S. adult population is estimated to have LHL.

Literacy: the Skill Upstream

Evidence for the effects of interventions on LHL seems to be either limited or mixed. Practices such as “Teach Back” have short-term benefits for patient understanding and ability to carry out self-management as these effects diminish over time and mastery of key information becomes elusive. The inadequacy of these measures is compounded by stigma that can accompany low literacy. Even patients with developed literacy skills may be embarrassed about a lack of understanding. Stigma, embarrassment, or simply the stress of a clinical appointment can prevent patients from asking clarifying or follow-up questions, a process integral to effective clinician-patient communication, shared decision making, and establishment of trust.

If existing methods which “skirt” around the issues of print literacy are inadequate to bridging gaps in patients’ needs and readiness to manage disease, achieving universal literacy should be the imperative to ensure that patients can manage disease now and in the future as treatments and diagnoses evolve. Thankfully, literature indicates a growing recognition by health educators of the potential for engaging with and implementing techniques from adult education, including integrated adult literacy. Yet in the U.S. achieving universal literacy has remained an immense challenge; systems in place lack sufficient system capacity and scale to address it. For example, only a fraction of U.S. adults in need of reading instruction have access to the literacy instruction they need (between 5 and 10%). Therefore scale could be the foremost significant issue for impact and improvement.

Literacies and GogyUp: Reading + Health

A paradigm shift is needed, from clinic-by-clinic intervention to highly scalable, low cost, in-the-moment support using assistive-reading technology (AT). GogyUp is proposing we shift the paradigm away from focusing on providers’ capacity to communicate and educate, and toward supporting patients’ capacity to access, comprehend, and internalize health education through AT, expanding their capacity for self-management in the moment on an as-needed basis.

Substantial evidence describes how AT equalizes information access across education levels. When combined with the near-ubiquity of mobile devices and telecommunications networks, assistive technology, specifically assistive-reading technology, holds the potential for universal, integrated adult literacy supports that could substantially impact diabetes self-management education. Sidewalk cutouts offer a useful analogy for whole-population benefit. While cutouts expand mobility to those using walkers and wheelchairs, they also provide unintended benefits to any child riding a bicycle or parent pushing a stroller. Similarly, benefits from assistive-reading technology could extend beyond the intended population (e.g., adults with limited functional literacy or English proficiency) to those with diminished eyesight and even fully literate adults simply struggling with difficult materials.

The National Institute of Nursing Research agrees. This September, GogyUp and our collaborators at the University of Minnesota School of Public Health and School of Medicine were awarded an SBIR Ph I research grant to conduct a pilot trial of the impact of embedded, in-the-moment reading assistance on functional health literacy for patients with diabetes seen in safety net clinics.

In our next post, we'll discuss the use case for implementing GogyUp's assistive-reading technology in clinic-based diabetes self-management education. In the meantime, more information on this project is available in this one pager.

You may also receive project updates by leaving your information on this form.

Learn More

Facts and Thinking About Adult Literacy

Diabetes and Health Literacy

Dyslexia and Health Literacy

Tools to Help

Sources:

Adult Literacy Facts | ProLiteracy. (n.d.). Retrieved January 7, 2019, from https://www.proliteracy.org/Resources/Adult-Literacy-Facts

Baker, D. W., Parker, R. M., Williams, M. V., Pitkin, K., Parikh, N. S., Coates, W., & Imara, M. (1996). The health care experience of patients with low literacy. Archives of Family Medicine, 5(6), 329–334. https://doi.org/10.1001/archfami.5.6.329

Communicating with patients who have limited literacy skills. Report of the National Work Group on Literacy and Health. (1998). The Journal of Family Practice, 46(2), 168–176.

Feinberg, I., Tighe, E. L., Greenberg, D., & Mavreles, M. (2018). Health Literacy and Adults With Low Basic Skills. Adult Education Quarterly, 68(4), 297–315. https://doi.org/10.1177/0741713618783487

Hargiss, J. B., St Jeor, J. D., Horn, J. L., & Garrison, G. M. (2021). Rapid Independent Health Literacy Assessment: A Pilot Study Among Native English-speaking and Low English Proficiency Patients. Journal of Primary Care & Community Health, 12, 21501327211037772. https://doi.org/10.1177/21501327211037773

Kandula, N. R., Malli, T., Zei, C. P., Larsen, E., & Baker, D. W. (2011). Literacy and retention of information after a multimedia diabetes education program and teach-back. Journal of Health Communication, 16 Suppl 3, 89–102. https://doi.org/10.1080/10810730.2011.604382

McNichol, B. R., & Rootman, I. (2016). Literacy and health literacy: New understandings about their impact on health. Social Determinants of Health: Canadian Perspectives, 261–290.

OECD. (2012). Education at a Glance 2012 (Summary in English). Organisation for Economic Co-operation and Development. https://www.oecd-ilibrary.org/education/education-at-a-glance-2012/summary/english_eag-2012-sum-en?parentId=http%3A%2F%2Finstance.metastore.ingenta.com%2Fcontent%2Fpublication%2Feag-2012-en

Paasche-Orlow, M. K., Parker, R. M., Gazmararian, J. A., Nielsen-Bohlman, L. T., & Rudd, R. R. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20(2), 175–184.

Parikh, N. S., Parker, R. M., Nurss, J. R., Baker, D. W., & Williams, M. V. (1996). Shame and health literacy: The unspoken connection. Patient Education and Counseling, 27(1), 33–39. https://doi.org/10.1016/0738-3991(95)00787-3

Pleasant, A., Rudd, R. E., O’Leary, C., Paasche-Orlow, M. K., Allen, M. P., Alvarado-Little, W., Myers, L., Parson, K., & Rosen, and S. (2016). Considerations for a New Definition of Health Literacy. NAM Perspectives. https://doi.org/10.31478/201604a

Prins, E., & Monnat, S. (2019). Literacy, Numeracy, and Self-Rated Health among U.S. Adults. In The Wiley Handbook of Adult Literacy (pp. 317–336). John Wiley & Sons, Ltd. https://doi.org/10.1002/9781119261407.ch15

Ritter, A., & Ilakkuvan, V. (2019). Reassessing health literacy best practices to improve medication adherence among patients with dyslexia. Patient Education and Counseling, 102(11), 2122–2127. https://doi.org/10.1016/j.pec.2019.05.024

Rothwell, J. (2020). Assessing the Economic Gains of Eradicating Illiteracy Nationally and Regionally in the United States. 9.

Schillinger, D. (2020). The Intersections Between Social Determinants of Health, Health Literacy, and Health Disparities. Studies in Health Technology and Informatics, 269, 22–41. https://doi.org/10.3233/SHTI200020

U.S. PIAAC Skills Map: State and County Indicators of Adult Literacy and Numeracy. (2020, April 14). National Center for Education Statistics. https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2020047

Vágvölgyi, R., Coldea, A., Dresler, T., Schrader, J., & Nuerk, H.-C. (2016). A Review about Functional Illiteracy: Definition, Cognitive, Linguistic, and Numerical Aspects. Frontiers in Psychology, 7, 1617. https://doi.org/10.3389/fpsyg.2016.01617

Vernon, J., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low Health Literacy: Implications for National Health Policy. Health Policy and Management Faculty Publications. https://hsrc.himmelfarb.gwu.edu/sphhs_policy_facpubs/172

Wilson, F. L. (2000). Measuring patients’ ability to read and comprehend: A first step in patient education. NursingConnections, 13(3), 19–27.