Using Technology to Improve Diabetes Self-Management
Type 1 diabetes (T1D) requires over 8,000 hours of self-management a year, including multiple daily decisions about how much insulin to take and how factors such as stress, exercise, and food will affect blood sugar levels. It is no surprise that many children and adults with T1D are unable to achieve and maintain recommended levels of diabetes control, no matter how hard they may try.
Diabetes self-management education and support (DSMES) is associated with improved diabetes knowledge and self-care behaviors, better control of blood sugars, improved quality of life and coping, and reduced health care costs. Better outcomes are seen when education and support are delivered over time, but T1D DSMES consists mostly of “survivor skills” training, crammed into clinic visits in the first hectic and stressful weeks after diagnosis. Unfortunately, studies have shown that 40-80% of the medical information patients receive is forgotten immediately, and that nearly half of what is retained is recalled incorrectly.
Traditional T1D education also often omits social and psychological support. Increasingly, patients and caregivers are turning to the Internet and social media for information and support. Patients and caregivers appreciate the expressions of care and concern they receive through social media interactions, they realize they are not alone in facing their disease, and they gain confidence and practical tips in handling self-management challenges. But they can also receive and follow incorrect and potentially unsafe information.
Medically-monitored Internet-delivered interventions present an opportunity to match the content and timing of education and support to what patients and families want and need, when and where they can most benefit from it. I aim to consolidate educational resources and create an online discussion forum in a Massive Open Online Course that anyone can access anytime, free of charge.
Massive Open Online Courses have been widely used in education for years, but are just now beginning to be used for health education and self-management support. The value of these so-called MOOCs is that they dramatically expand access to education and information using a learning system platform that facilitates acquisition and assessment of competencies in a collaborative learning environment. Research has shown that the completion rate for health-related MOOCs is higher than those in traditional education settings. This is not surprising knowing more than a third of Americans use the Internet to learn about their health care conditions.
Modules of our Type 1 diabetes MOOC will focus on the American Association of Diabetes Educators’ seven self-care behaviors essential to successful and effective diabetes self-management: (1) healthy eating; (2) physical activity; (3) medication use; (4) monitoring and using data; (5) preventing, detecting and treating complications; (6) healthy coping; and (7) problem solving. We will also provide education on Type 1 diabetes pathophysiology and treatment to bolster knowledge about the disease.
Each module will present information in multiple ways to appeal to a wide range of learners and adhere to the Integrated Theory of Health Behavior Change, which suggests that health behavior change can be enhanced by fostering knowledge and beliefs, increasing self-management skills and abilities, and enhancing social facilitation. Modules will include “tips and tricks” that add the lived experience provided by patients and families themselves. Some content will be aimed at caregivers, while other components will be designed for kids. Users will be able to interact with each other.
In developing modules, I will use a cyclical research design (Figure 1) of asking caregivers and children what information and support they need coupled with content development and surveys on the usefulness of proposed content and system usability. Following this methodology will allow me to build a MOOC that is user-generated, complements in-person diabetes education at the doctor’s office, and avoids gaps that are noted in existing online Type 1 diabetes education and support.
My MOOC development team includes nationally recognized researchers in diabetes, diabetes education, clinical psychology, resilience, technology acceptance and uptake, patient-centered interventions, and childhood and adult education.
With your support, I will be able to develop a prototype MOOC that has been refined and feasibility tested for usefulness and usability. It will then be ready for a larger clinical trial to study its effect on outcomes such as A1c, diabetes distress, and health care costs.
This work is important for the 1.25 million people living with T1D and the 40,000 primarily children diagnosed with T1D each year. It also is very personal for me. I am a physician, educator, mother to a child with T1D, and spouse to a husband with T1D. I am active with and knowledgeable about the diabetes online community and regularly attend and present at conferences for adults and families with T1D. I am eager to develop accessible, low-burden interventions to supplement the T1D education and guidance provided in the doctor’s office.