Diabetes Digital Health and Telehealth

By David C. Klonoff and David Kerr

Diabetes Digital Health and Telehealth explains, from technologic, economic and sociologic standpoints how digital health and telehealth have come to dominate the management of diabetes. The book also includes information on improved telemedicine tools and platforms for communicating with patients, reviewing medical records, and interpreting data from wearable devices. In addition, evolving wearable sensors such as continuous glucose monitors, closed loop automated insulin delivery systems, cuffless blood pressure monitors, exercise monitors and smart insulin pens are covered.

• Covers advances in the fields of digital health and telehealth, including research methods, relevant types of evidence, and viable endpoints for assessing the clinical and economic benefits of digital health and telehealth for diabetes
• Discusses improved telemedicine tools and platforms for communicating with patients, reviewing medical records and interpreting data from wearable devices
• Analyzes information gaps, research methods, relevant types of evidence, and viable endpoints for assessing the clinical and economic benefits of digital health and telehealth for diabetes

• Language: English
• Publisher: Academic Press
• Release date: Aug 5, 2022
• ISBN: 9780323906760

Book preview

Part I

Building digital health and telehealth tools for diabetes

Outline

Chapter 1. Democratizing access to and understanding of health information in the era of telehealth

Chapter 2. Building digital health tools for diabetes: how user experience research and user interface design can improve digital health adoption

Chapter 3. Integrating diabetes technology data in the EHR

Chapter 4. Interoperability risks and health informatics

Chapter 5. Cybersecurity in the diabetes care ecosystem

Chapter 6. Privacy and diabetes digital technologies and telehealth services

Chapter 7. Telehealth and digital health privacy regulations

Chapter 8. Business considerations in starting a diabetes digital health start-up

Chapter 1: Democratizing access to and understanding of health information in the era of telehealth

David Kerr, and Namino Glantz     Sansum Diabetes Research Institute, Santa Barbara, CA, United States

Abstract

In the United States, diabetes disproportionately impacts minority populations. Although telehealth offers many potential benefits for people with diabetes, during the COVID-19 pandemic the rapid switch to virtual visits highlighted existing challenges of inequitable access to digital technologies, digital illiteracy, and unreliable Internet connectivity, widening an existing digital divide already faced by these same minority communities. Health literacy varies by sociodemographic characteristics, with lower health literacy among adults aged 65 and older, individuals who did not graduate from high school, live below the poverty level, and/or are uninsured or publicly insured. These populations are also impacted by limited access to understandable online information. Further, most digital health devices are not designed for, with, or by people with limited literacy, numeracy, and/or proficiency in English. Further, the shift to telehealth also obscured the collective nature of a personal health strategy, a dynamic that engages family and social therapy networks as well as the individual in their approach to diabetes self-management. For telehealth to address these challenges successfully, this will require equitable access to the relevant technologies, sustained connectivity to the internet, democratization of knowledge, and expansion of connected health to include long-excluded patient populations as well as their informal therapy networks.

Keywords

COVID-19; Diabetes; Digital divide; Disparities; Internet; Literacy; Minorities; Numeracy; Telehealth; Therapy network

Abbreviations

CGM,    continuous glucose monitor;

COVID-19,    coronavirus disease 2019;

INFLESZ,    índice Flesch-Szigriszt;

PWD,    persons with diabetes;

SDRI,    Sansum Diabetes Research Institute;

T2D,    type 2 diabetes;

US,    United States

Summary

• Lack of access to digital technologies, digital illiteracy, and unreliable connectivity to the Internet are significant barriers to equitable access to telehealth.

• Information dissemination without understanding will limit the impact of telehealth.

• For telehealth to be successful, engagement may need to include family members and their social therapy networks.

Statistics

In the United States:

1. The rates of diagnosed diabetes in adults by race/ethnic background are:

7.5% of non-Hispanic Whites

9.2% of Asian Americans

12.5% of Hispanics/Latinos

11.7% of non-Hispanic Blacks

14.7% of American Indians/Alaskan Natives

2. One in four Medicare beneficiaries lacks digital access.

3. 9 out of 10 adults struggle to understand and use health information when it is unfamiliar, complex, or jargon-filled.

Introduction

In the United States (US), diabetes disproportionately impacts minority populations. Although telehealth offers many potential benefits for persons with diabetes (PWD), during the COVID-19 pandemic the rapid switch to virtual visits highlighted existing challenges of inequitable access to digital technologies, digital illiteracy, and unreliable Internet connectivity, widening an existing digital divide already faced by these same minority communities. These populations are also impacted by limited access to understandable online information. In addition, most digital health devices are not designed for, with, or by people with limited literacy, numeracy, and/or proficiency in English. Further, the shift to telehealth also obscured the collective nature of a personal health strategy, a dynamic that engages family and social therapy networks as well as the individual in their approach to diabetes self-management.

For telehealth to address these challenges successfully, this will require equitable access to the relevant technologies, sustained connectivity to the internet, the democratization of knowledge, and the expansion of connected health to include long-excluded patient populations as well as their informal therapy networks.

What is the current status of health information access in the era of telehealth?

One unforeseen consequence of the COVID-19 pandemic was the rapid acceleration of telehealth—the use of a broad scope of digital technologies to deliver medical care, health education, and public health services by connecting multiple users in geographically remote or physically isolated locations [1]. Telehealth encounters can take many forms including (a) synchronous face-to-face video-enabled consultations; (b) real-time audio interactions; (c) asynchronous communication involving email, text-messaging and other methods of nonreal time communication; and (d) combined approaches, which can involve both synchronous and asynchronous communications [2]. For PWD, the use of telemedicine appears to be acceptable (especially if endorsed by physicians) and has been associated with improvements in glycemic control [3]. Other potential benefits of telehealth include lowering barriers to accessing diabetes education, medical nutrition therapy, and online support groups.

However, the rapid switch to a predominantly telehealth-based system has also highlighted and exacerbated existing challenges of inequitable access to digital technologies, digital illiteracy, and the digital divide [4]. Further, this shift reveals a new Achilles' heel of telehealth. In the rush toward technology-enabled personalized precision medicine, the collaborative social nature of the informal household production of health has become obscured. For several communities and individuals, telehealth is a group project, the success of which rests on (a) the democratization of knowledge and (b) the expansion of connected health to encompass stakeholders beyond the patient and their healthcare professional, i.e., others connected to and engaged in the care of PWD. This family and social therapy network is often the conduit of knowledge as well as the means to access telehealth. As a result, this group plays a critical role in the creation and validation of telehealth for diabetes care, especially for the medically underserved.

What are barriers to progress to health information access in the era of telehealth?

Disparities in access to telehealth

In the US, type 2 diabetes (T2D) disproportionately impacts non-Hispanic Black, Hispanic/Latino, and Native American populations compared to non-Hispanic Whites [5]. For telehealth to be successful, it is important that PWD have access to the technology required for virtual visits and online information gathering. Currently, in the US, one in four Medicare beneficiaries lacks digital access. Those without digital access are more likely to be older, members of racial or ethnic minority communities, and from low-income households [6]. Reliable internet access at home may also be unaffordable for these same groups. Among PWD, those with public insurance and those with a primary language other than English were less likely to use telemedicine for diabetes care during statewide shelter-in-place orders [7]. During the early phase of the pandemic in 2020, poorly controlled T2D was quickly established as a major risk factor for poor outcomes from COVID-19, and therefore patients with suboptimal control could have been a priority for telehealth-based interventions. This did not happen. In the absence of access to care via telemedicine, alternatives for these groups were limited and included postponing visits, receiving limited care by phone, or seeking in-person care such as attending urgent care—options running counter to published pandemic recommendations [7].

In the US, technologies to support self-management of diabetes have had limited reach to racial and ethnic minorities [4]. Compounding this, in the US, 40% of adults do not understand clinical trials, and minorities are underrepresented as researchers, research participants, and care professionals [8]. Further, except for parental caregiving for children with type 1 diabetes, little research on the use of diabetes technologies has extended beyond the individual with diabetes using the device or software to include their peripheral therapy and support networks [9]. Developers of telehealth devices and protocols must understand the experiences and address the needs of these long-excluded users. Participation in telehealth also becomes more difficult if the PWD has to access multiple professionals and if personal privacy when discussing sensitive information becomes an issue. Video consultations may also introduce negative professional bias after viewing the patient's living environment [10].

Diabetes and health illiteracy: intertwined wicked problems

Diabetes and health illiteracy are wicked problems—problems that are challenging to solve because of contradictory and changing requirements, the absence of equality, and ever-evolving social complexities [11]. Further, the ability to self-manage diabetes successfully is often challenged by health illiteracy and innumeracy. In the US, 9 out of 10 adults struggle to understand and use health information when it is unfamiliar, complex, or jargon-filled [12]. There is also variation in health literacy according to sociodemographic characteristics, with lower health literacy found among adults aged 65 and older, individuals who did not graduate from high school, and/or who live below the poverty level, and/or are uninsured or publicly insured, with Hispanic/Latino adults having lower average health literacy than adults in any other racial or ethnic group [12].

Health literacy plays a substantial role in diabetes self-care. A potential benefit from telehealth is generation of data collected from wearable devices such as glucose meters, continuous glucose monitors (CGMs), accelerometers, and soon, smart insulin pens. However, successful conversion of this type of information into actionable knowledge is problematic among people for whom complex numerical calculations are challenging [13]. Difficulties in reading, writing, and listening impact the ability of individuals to learn about diabetes and understand and manage the monitoring and treatment required of them. In the US, innumeracy also appears to be a factor contributing to racial disparities in glycemic control [14]. A potential solution to overcome literacy and numeracy barriers is for manufacturers of new devices to consider literacy and numeracy along with native language, culture, and age, during device development and when creating the training materials associated with the product. At each stage of the development process, target users need to be involved.

Infodemic and poor readability of health information

During the COVID-19 pandemic, public health information has been provided through a variety of media and updated very frequently. Beyond scientific studies, there are also official communications from health organizations, news and opinion articles, and social media messages. The enormous volume of information has been described as an infodemic. Worse yet, a proportion of official sources of COVID-19 information has been written at an 11th-grade reading level, making the material too complex for many readers [15]. Excessive or poorly crafted information during the pandemic has led to distress with subsequent avoidance of new information [16].

In general, participants in clinical trials should have access to brief nontechnical overviews of the findings, but they invariably do not [17]. For PWD, peer-reviewed medical journal publications, with complex language and paywalls, are out of reach and usually lack lay summaries of new research findings. Even publicly available diabetes information is often not written at (for many) an appropriate health literacy and numeracy level in English [18].

In response to the infodemic, the World Health Organization has posted free guidance on how to prevent information overload, and how to decide what information to trust [19]. In the US, the Centers for Disease Control and Prevention has also introduced a find and replace strategy to correct misinformation [20]. During the development and validation of telehealth components, it is therefore important that steps are taken to mitigate the infodemic by considering the readability of health information as part of the user interface and user experience.

What is needed to advance health information access in the era of telehealth?

Democratizing access to and understanding of medical information

At Sansum Diabetes Research Institute (SDRI), we have implemented two strategies to improve the readability of health information for Hispanic/Latino families, a population with a disproportionate burden of poor outcomes from the combined pandemics (i.e., syndemic) of T2D and COVID-19:

1. Engaging Latino community members with low formal education as researchers and research participants using SDRI's Community Scientist Model to measure, among other variables, health literacy, and confidence in health literacy/numeracy skills in participants volunteering for research programs [21] and

2. Increasing accessibility and usability through a free web resource providing contemporary, bilingual, and understandable information on diabetes and COVID-19.

Engaging community members in research

To engage Hispanic/Latino community members with low formal education as researchers and research participants, SDRI developed a novel Community Scientist Model to support the Mil Familias program, for which the primary objective is determining the influence of the major determinants of human health (genetics, biology, behavior, psychology, society/environment) on the real-world burden of T2D for Hispanic/Latino families. For this program, local bilingual Latinos with low formal education (often less than a high school education) and some previous training as volunteer community health workers were recruited. These Community Scientists (also known as Especialistas) are involved in (a) participant recruitment and retention; (b) data collection including the application of wearable technologies (e.g., activity monitors and CGMs); point of care hemoglobin A1c testing; administration of validated psycho-social questionnaires in English and Spanish; and (c) cultural oversight of creation of program materials. Facilitated by an Especialista, each individual family member contributes data annually on over 100 different variables [21]. In this observational cohort (Latinos who currently have at least one family member with T2D), among participants with data by November 4, 2020, we have observed that (1) 98% of participants were born outside the US, mostly in Mexico, (2) the majority had low levels of education with nearly half not completing high school, (3) 63% had an annual household income under $25,000, and (4) 43% had no health insurance [Unpublished observation].

Increasing readability of health information

Original sources of health research information (e.g., peer-reviewed journals, public health announcements, etc.) have an average reading grade level of 15, meaning that, to understand the original sources' health and research information, a reader must have minimum 3years of college [Unpublished observation]. In response to the complexity of published research information and low levels of health literacy and lack of confidence in health literacy/numeracy skills, a free bilingual resource (https://latinodiabetes.sansum.org/) was created using a strategy involving plain language and reducing the reading level of any text by replacing medical jargon and technical terms with words people use every day. Recent, relevant articles from peer-reviewed medical journals or authoritative media sources are selected to update the site four times each week. Each article is summarized from the original technical, clinical, scientific language into simpler lay language in both Spanish and English. A related image is also posted with the text. A COVID-19-specific page was added to the site in March