Increasing Health Equity Through In-The-Moment Reading Assistance for Adults With Diabetes Served at Community Health Centers

Diabetes self-management requires knowledgeable communication and capacity for self-management. People with type 2 diabetes mellitus (T2DM) must learn from health care providers about the condition to build knowledge on how to manage the disease and competently carry out self-management. T2DM self-management is extensive: estimates of time spent on recommended self-management activities can exceed 10 hours per week, equivalent to part-time employment. Effective T2DM-related self-management requires patients to read, understand, and execute care plans. In short, T2DM comes with a demanding workload that assumes patients have enough capacity to read and follow complex instructions to successfully manage their disease.

Barriers to building understanding and competence for self-management both reflect and contribute significantly to inequality. Existing social systems in the United States have provided inequitable educational achievement, including literacy in general and health literacy in particular. The result is that the U.S. has widespread and entrenched adult illiteracy. 18% of U.S. adults (roughly 44 million) are unable to decipher unfamiliar words or identify information in short texts. In practical terms, a large segment of the U.S. population is without the skills to read medicine or nutrition labels, follow written aftercare instructions, etc. This deficit is reflected in the T2DM patient population. Large percentages (e.g., 35-55%) of individuals with T2DM have reading levels at 6th grade or below, with lower literacy significantly associated with several demographic variables (e.g., lower socioeconomic status), indicating inequitable distribution. Moreover, lower functional English and health literacy, and poorer diabetes knowledge, are associated with poorer glycemic control.

However, work on facilitating the entry of adults with limited literacy and English proficiency into the workforce demonstrates that these challenges can be successfully addressed through an integrated adult literacy approach. This approach of "integrated adult literacy" combines the delivery and understanding of concepts and information with in-the-moment assistive-reading technology and contextualized literacy instruction regardless of whether an adult employee is correctly perceived to be at risk for missing critical information.

Health care supports for capacity in self-management lack appreciation for integrated adult literacy and have limited effectiveness. Health literacy is not only an individual issue, but also reflects if systems and materials are calibrated to individual capacity. Yet health care does not typically operate in recognition of this fact. Written patient materials for post-visit care are consistently complex, often far exceeding the intended consuming audience's reading level. Meanwhile, practices such as "Teach Back" and including interpreters in clinic visits have short-term benefits for patient understanding and ability to carry out self-management; as these effects diminish over time, mastery of key information becomes elusive. The inadequacy of these measures is compounded by stigma that can accompany low literacy or limited English proficiency. Even patients who have 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 establishing content mastery.

Existing systems are inadequate to bridging gaps in patients' needs and readiness to manage diabetes. Achieving universal literacy in the U.S. adult population historically has been a major 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 it. Literature indicates a growing recognition by health educators of the potential for engaging with and implementing techniques from adult basic education, including integrated adult literacy. However, significant factors would still limit the impact which implementing such measures could have for patients with limited literacy or English proficiency. Foremost would be the significant issue of scale needed for impact and improvement.