Health Literacy and Type 2 Diabetes Mellitus Prevention
Written by Ned Zimmerman-Bence, Co-Founder of GogyUpNovember is National Diabetes Awareness Month (NDAM). Because it follows on the heels of October's dyslexia and health literacy awareness campaigns, NDAM presents a significant lens through which we can understand the exponential impact increasing the percentage of reading and health literate adults can have on every family and our national prosperity. A quick review can help connect diabetes to the broader context of literacy and health literacy in particular.
Diabetes Has a Sweet Name But a Catastrophic Impact
Diabetes mellitus is a chronic disease caused by the body's inability to either make insulin (type 1 diabetes) or a body's inability to use insulin (type 2 and gestational diabetes). The term "diabetes" is shorthand for the disease's full name diabetes mellitus - derived from the Greek word "diabetes" meaning "to siphon" and the latin word for sweet - "mellitus". Type 1 diabetes mellitus is a lifelong condition currently without a cure and thought to be caused by an autoimmune reaction. Type 1 diabetes causes between 5-10% of all diabetic cases and typically develops during childhood or young adulthood, requiring insulin injections for survival. Type 2 diabetes mellitus (T2DM) causes the other 90-95% of cases and typically affects adults (although there has been a pronounced rise in the rates of childhood onset for T2DM). Unlike type 1 diabetes, type 2 can be delayed or even prevented through increased activity and changes to diet. Gestational diabetes, as its name implies, is a form of diabetes affecting women who never had diabetes before they became pregnant and cannot create and use enough insulin during pregnancy.
What often gets lost in the complexity of diabetes is the scale of the impact it has on our population:
18% of all U.S. adults are expected to develop T2DM by 2025 - a mostly preventable condition.
Given that 18% of the adult population may develop T2DM, it's worth considering the disease's effects on the body:
extreme thirst
fatigue
delayed emptying of food from stomach, causing bloating, heartburn, nausea
increased risk of infection
increased blood pressure
declining pancreas function
increased risk of cataracts and glaucoma
neuropathy (damaged nerves) - especially in feet
increased risk of heart disease
increased risk of stroke
Impact Beyond the Body
Aside from the impact on the individual's body, the disease impacts one's family and loved ones as well. Family members and caregivers experience increased stress as they try to navigate their role in caring for a person with diabetes. In fact, the stress a diabetes diagnosis can generate has been found to be greater in the patients' supporters than in the patients themselves. This "collateral impact" presents additional concern as T2DM individuals with strong support systems have remarkably greater outcomes than those who must manage the disease on their own.
The impact on a diabetic patient's personal finances can be equally stressful and even exacerbate the disease's effects. Zooming further out from the immediate patients and their caregivers, the impact T2DM has in terms of national costs and productivity is immense. According to the CDC, "$1 out of every $4 in US health care costs is spent on caring for people with diabetes. $237 billion is spent each year on direct medical costs and another $90 billion on reduced productivity."
Chain of Complexity, Part 1: Health Literacy and Disease Prevention
Improved health Literacy leads to lower rates of diabetes. The World Health Organization defines health literacy as "the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health”. For well over a decade, the critical role health literacy has in improving one’s quality of life and health outcomes has been consistently validated independently and found to have an especially positive impact on prevention and self-management of complex diseases such as type 1 and type 2 diabetes.
Successfully self-managing and preventing type 2 diabetes mellitus (T2DM) requires a significant level of health literacy proficiency, which in turn requires a significant level of reading literacy in order to properly follow self-management materials and diabetes education. The impact of health literacy in preventing complex diseases becomes clear when looking at the prevalence of type 2 diabetes according to education level: 14% of adults without a high school diploma vs. 7.5% of those with high school or greater have T2DM. Individuals with less education are more likely to have a lower level of health literacy.
Unfortunately low health literacy is common in the US - over a third of U.S. adults have basic or below basic health literacy and would have difficulty managing common health-related tasks. Yet, tasks required for successful T2DM self-management are often far more complex than "common" health-related tasks. Increasing the number of health literate adults takes on added urgency when considering the prevalence of diabetes discussed earlier and the estimated 88 million U.S. adults with pre-diabetes.
Chain of Complexity, Part 2: Literacy and Health Literacy
Low health literacy is further compounded by the vast number of U.S. adults with limited literacy. Literacy is a critical skill necessary for developing competency in many domain areas, but it is especially relevant towards developing proficient health literacy. As we noted in an earlier post, more than 38 million U.S. adults are currently unable to read basic sentences. The impact this has on the nation's ability to manage and prevent T2DM cannot be ignored as the majority of health information is consistently written at a level far beyond patients' capacity to understand and diabetes disproportionately affects those with lower levels of education.
Unfortunately, the system tasked with coordinating adult literacy education, the adult education system (AE), has extreme capacity issues. Current funding levels and the wide range of duties the AE system must perform results in severely constricted capacity to teach adult non-readers the literacy skills they need: the organization ProLiteracy estimates that only 5-10% of adult non-readers have access to the literacy instruction they need.
GogyUp and T2DM
It is our vision to relieve the AE system's constrained capacity, overcoming years of interrupted literacy education for millions and unleash the productivity and increased quality of life for those affected by limited literacy.
We are therefore extremely excited to partner with the University of Minnesota School of Public Health, School of Medicine and the Community University Health Care Clinic on a SBIR Phase I grant to provide in-the-moment support for type 2 diabetes mellitus (T2DM) patient information via our assistive-reading technology. During the grant from the National Institute of Nursing Research, patients will have access to the same patient education materials that are normally available but they will be incorporated into the GogyUp mobile platform.
By using GogyUp's personalized, assistive-reading technology with their patient education materials, the platform will be able to provide in-the-moment support for patients’ capacity to read and understand the difficult written materials necessary to understand and successfully adhere to their T2DM self-care management plan. Meanwhile, clinicians and health educators can get real-time end-user data on how well their materials are understood and be able to revise and adjust as necessary to adapt to an individual's and cohort's specific needs.
This large, randomized, controlled trial will evaluate whether the GogyUp Reader app provides a measurable impact on T2DM patients' self-management capacity through improved understanding of clinic materials and a real-world implementation and assessment of the GogyUp Reader for a prevalent health problem (T2DM). Our plan is to scale and develop a fully powered randomized controlled trial across a larger, regional network of Federally Qualified Health Centers in rural, suburban, and urban settings, to test the app in a Phase II SBIR grant. Potential outcomes include widespread adoption of a highly scalable and low cost technology with potential to improve patient capacity and reduce health disparities through improved understanding. Our Ph III goal will be to provide GogyUp as a durable, sustainable, and highly scalable solution for improving patient capacity for complex disease self-management in the short-term time horizon and over time as a long-term aid in building both reading literacy and health literacy proficiency in millions of patients.
A one-pager describing the study is available here.
If you are connected to a clinic that may be interested in participating in our study, please contact Ned Zimmerman-Bence: ned.zb@gogyup.com