Understanding the Current Landscape of Health Literacy Interventions within Health Systems

Background Information

Individuals engage with health systems to determine their health status and how to manage their health outcomes. On the personal level, health literacy is the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others. Individuals with low levels of health literacy are at risk for increased hospitalizations, chronic disease morbidity rates, and higher mortality rates compared to individuals with higher levels of health literacy. There is an increased need to both assess health literacy and to implement interventions to improve health literacy.

Purpose

The purpose of this literature review is to identify gaps in the current landscape of health literacy interventions within health systems. The findings will be used to inform future interventions.

Findings

• Patients with chronic diseases are target groups for health literacy assistance.

• Health systems encourage active stakeholder participation in the development of health literacy interventions.

• Social support activities such as group-based education or one-on-one consultation with an expert are utilized in health system-driven health literacy interventions.

• Patients report a lack of confidence in assessing the quality of information on the internet and using this information to make health decisions.

• Studies show statistically insignificant changes between the intervention and control group despite patients reporting positive experiences with the health literacy intervention.

• Health literacy screening assessments are not an established part of the hospital intake process.

Introduction

The Centers for Disease Control and Prevention (CDC) national public health initiative Healthy People 2030 reframes health literacy into two parts: personal health literacy and organizational health literacy.¹ The CDC defines personal health literacy as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others” ² and defines organizational health literacy as “the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others”.² In addition to struggling to interpret health information, individuals with low levels of personal health literacy are at risk for increased hospitalization rates, chronic disease, and higher mortality rates.³ By improving health literacy levels, individuals are able to actively engage in managing health outcomes for themselves and others ³. Furthermore, the CDC recommends organizations to become health literate to have the capabilities to assist patients in increasing personal health literacy levels.⁴

Health systems are possible organizations involved in managing individuals' health literacy levels. According to the Agency for Healthcare Research and Quality (AHRQ), health systems are defined as an “organization that includes at least one hospital and at least one group of physicians that provides comprehensive care (including primary and specialty care) who are connected with each other and with the hospital through common ownership or joint management”.⁵ Through the concept of personal health literacy, individuals are responsible for managing their own health outcomes and navigating the healthcare system, but organizations such as health systems can make this process easier for individuals. Research has shown that increased coproduction of care between patients and health services can lead to outcomes such as enhanced patient satisfaction, better care coordination, and improved health status.⁶ The National Academies of Science, Engineering, and Medicine's (NASEM) Roundtable on Health Literacy identified 10 attributes healthcare organizations can utilize to become health literate.⁷ Specifically, these 10 attributes are:

1. “Has leadership that makes health literacy integral to its mission, structure, and operations.

2. Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement.

3. Prepares the workforce to be health literate and monitors progress.

4. Includes populations served in the design, implementation, and evaluation of health information and services.

5. Meets the needs of populations with a range of health literacy skills while avoiding stigmatization.

6. Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact.

7. Provides easy access to health information and services and navigation assistance.

8. Designs and distributes print, audiovisual, and social media content that is easy to understand and act on.

9. Addresses health literacy in high-risk situations, including care transitions and communications about medicines.

10. Communicates clearly what health plans cover and what individuals will have to pay for services.”⁷

It is important to acknowledge the rise in digital health technologies enabling health systems to provide flexible and accessible healthcare services for consumers.⁸ Examples of these technologies include telemedicine, e-prescribing, electronic health records, and patient portals. In order to understand how individuals find and understand health information from electronic sources, the concept of electronic health (eHealth) literacy was defined by Norman and Skinner: “the ability to appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem”.², ⁹ Although personal health literacy and eHealth literacy involve finding and understanding health information, these concepts cannot be used interchangeably. This paper seeks to understand how health systems are enabling patients to access and understand health information to make health-related decisions for themselves. Generally, the mode of the intervention (in-person versus electronic) dictates the type of health literacy assessment used to measure their outcomes of interest. To determine which health literacy interventions health systems are conducting, a literature review was performed to understand the current landscape of studies on health literacy interventions within health systems. The literature review will attempt to answer several research questions about health literacy interventions occurring within health systems:

• How do health systems assess consumers to determine whether they will need assistance with health literacy?

• Where do systems find help with health literacy?

• What health literacy interventions are used within health systems? If they exist, how do they operate to meet consumers' needs?

• What gaps in health system-driven interventions are unanswered?

Methods

Articles were identified by constructing a search strategy for PubMed. PubMed was chosen as the sole database, as it contains millions of full-text articles from life sciences and biomedical science journals. The search period lasted from November 1, 2021, to November 9, 2021. Relevant keywords for the database search included health systems, health literacy, and interventions. For the purpose of this study, AHRQ's definition of health system was used. However, other examples of organizations providing health literacy programs are community health centers and federally qualified health centers. These centers may not be included in the common definition of a health system, but we expanded the definition in relation to our research question. These key terms were used to construct search terms, which included the aforementioned terms and related Medical Subject Headings (MeSH) terms. Duplicate publications were removed using Zotero's duplication finder. Additional articles were included through forward snowballing.

After the initial search was conducted, a 10-year filter was used to obtain articles published within the last 10 years. Once duplicate articles were removed, titles and abstracts were screened based on relevancy. Articles were deemed relevant if the articles involved a patient sample and health literacy, or disease-specific knowledge as an outcome of the study. These same screening criteria was utilized during the full-text review.

Full-text articles were reviewed in an ascending chronological order with column topics using the matrix method.¹⁰ Fundamental information such as the author, title, journal, purpose, study design, patient characteristics, outcome(s), results, and implications of the study was recorded.

Results

A total of 1,590 articles were identified from the initial search strategy with no duplicates. Two additional articles were found through snowballing. A total of 1,592 records were screened using the inclusion and exclusion criteria. After screening the title and/or abstracts, 79 articles were determined to meet the criteria for full-text assessment. A total of 12 full-text articles were excluded after the full-text assessment, leaving 67 articles included in the final review. Table 1 summarizes the type of research approach and study design for the 67 studies.¹¹, ¹², ¹³, ¹⁴, ¹⁵, ¹⁶, ¹⁷, ¹⁸, ¹⁹, ²⁰, ²¹, ²², ²³, ²⁴, ²⁵, ²⁶, ²⁷, ²⁸, ²⁹, ³⁰, ³¹, ³², ³³, ³⁴, ³⁵, ³⁶, ³⁷, ³⁸, ³⁹, ⁴⁰, ⁴¹, ⁴², ⁴³, ⁴⁴, ⁴⁵, ⁴⁶, ⁴⁷, ⁴⁸, ⁴⁹, ⁵⁰, ⁵¹, ⁵², ⁵³, ⁵⁴, ⁵⁵, ⁵⁶, ⁵⁷, ⁵⁸, ⁵⁹, ⁶⁰, ⁶¹, ⁶², ⁶³, ⁶⁴, ⁶⁵, ⁶⁶, ⁶⁷, ⁶⁸, ⁶⁹, ⁷⁰, ⁷¹, ⁷², ⁷³, ⁷⁴, ⁷⁵, ⁷⁶, ⁷⁷ The literature review reveals two study approaches conducted by researchers and health systems to understand the current landscape of health literacy interventions within health systems: cross-sectional surveys and randomized controlled trials. Cross-sectional surveys were typically presented to patients as a way to determine their current levels of health literacy and/or eHealth literacy, as well as determining associated predictors for these literacy levels. Randomized controlled trials measured the effects of educational interventions designed and delivered by health systems on patients' specific disease knowledge, health literacy, or eHealth literacy. Both study approaches used pre-developed scales to measure levels of eHealth literacy and/or health literacy, depending on the outcome of interest in the study. The interventions used the scales as health literacy assessments to assess changes in health literacy and/or eHealth literacy. These scales are discussed in a later subsection. The 67 studies were analyzed for themes related to the research questions. The themes are presented in the following subsections according to the research questions.

Table 1.

Research Design of the 67 Studies

Research Approach	Study Design (Reference)	Counts	N (n = 67)
Quantitative			63 (94%)
	22,26,31,32,34,35,39– Cross-sectional 41,45,46,52,54,56,58–60,67,69,71–73,75–77	25
	Randomized controlled trial 17,23,25,30,36,43,47– 49,57,63,65,74	13
	Pre-test, post-test with no control group 11,15,18,19,28,38,42,66,68	9
	12–14,24,33,33,50,51,55,62,64 Quasi-experimental	11
	Secondary analysis 20,27,37,44	4
	Observational study 21	1
Qualitative			1 (1.5%)
	Descriptive analysis 16	1
Mixed-methods			3 (4.5%)
	Convergent mixed-methods 29	1
	Explanatory mixed-methods 70	1
	Sequential mixed-methods 53	1

How do health systems assess consumers to determine whether they will need assistance with health literacy?

Theme 1: Patients with chronic diseases are target groups for health literacy assistance.

A majority of the health literacy interventions targeted patients with chronic diseases.¹¹, ¹², ¹³, ¹⁴, ¹⁵, ¹⁶, ¹⁷, ¹⁸, ¹⁹, ²⁰, ²¹, ²³, ²⁴, ²⁵, ²⁸, ³⁰, ³³, ³⁶, ³⁷, ³⁸, ⁴², ⁴³, ⁴⁴, ⁴⁷, ⁴⁸, ⁴⁹, ⁵⁰, ⁵¹, ⁵³, ⁵⁵, ⁵⁷, ⁶¹, ⁶², ⁶³, ⁶⁴, ⁶⁵, ⁶⁶, ⁶⁸, ⁷⁴ Examples of these chronic diseases include chronic obstructive pulmonary disease (COPD), diabetes, coronary heart disease, congenital heart disease, prostate cancer, arthritis, inflammatory bowel disease (IBD), HIV, epilepsy, skin cancer, and chronic kidney disease.

Health systems conducted studies to determine associations between levels of health literacy or eHealth literacy levels and potential predictor variables such as age, education, internet usage, access to electronic resources, and quality of life.²², ²⁹, ³¹, ³², ³⁴, ³⁵, ³⁹, ⁴⁰, ⁴¹, ⁴⁶, ⁵², ⁵⁴, ⁵⁴, ⁵⁶, ⁵⁷, ⁵⁸, ⁵⁹, ⁶⁰, ⁶⁷, ⁶⁹, ⁷¹, ⁷², ⁷³, ⁷⁴, ⁷⁵, ⁷⁶, ⁷⁷ Although it was not found to be significant in all studies, age and education were common predictors of health literacy levels compared to other predictor variables. One study evaluated the effects of telehomecare. Telehomecare uses telehealth technology to deliver healthcare services to a patient at home, enabling the interaction of voice, video, and health-related data on functional literacy. The study was conducted over the span of 10 months in patients with COPD.³⁰ The researchers found no statistically significant changes in functional health literacy between groups, but significant increases in functional health literacy were found within the telehomecare group and the control group receiving usual care after the intervention. A regression analysis determined age and years of education as variables significantly associated with levels of functional health literacy at the 10-month follow-up.³⁰

High internet usage, high levels of education, and frequent access to electronic resources to find health-related information was consistently associated with higher levels of eHealth literacy. ²², ³⁴, ³⁵, ⁴⁰, ⁴², ⁴⁵, ⁵², ⁵⁶, ⁶⁹, ⁷², ⁷⁶ One cross-sectional study sampled outpatients receiving medical imaging and issued a questionnaire containing questions about eHealth literacy, demographics, and frequency of internet usage.⁵² This study used a cluster analysis and grouped outpatients according to their answers to the eHealth Literacy Scale (eHEALS). The researchers identified four major groups of eHealth literacy adequacy: low eHealth literacy, moderate eHealth literacy, high eHealth literacy, and very high eHealth literacy. Outpatients receiving medical resonance imaging (MRI) who preferred to receive a lot of health information or used the internet at least daily had higher odds of having high eHealth literacy levels when compared to the low eHealth literacy group.⁵²

Theme 2: Scales are used to screen for health literacy levels and measure the impact of interventions.

Various scales were used to measure and assess changes in health literacy. These scales included: Danish Test of Functional Health Literacy in Adults (TOFHLA), Short Test of Functional Health Literacy in Adults (S-TOFHLA) Health Literacy Questionnaire (HLQ), European Health Literacy Survey Questionnaire (HLS-EU), Rapid Estimate of Adult Literacy in Medicine (REALM), Brief Health Literacy Screen (BHLS), Functional Communicative Critical Health Literacy (FCCHL), and Newest Vital Sign (NVS). The eHEALS was used as the sole scale to measure and assess changes in eHealth literacy. Table 2 summarizes the scales and domain-specific questionnaires found in the literature review and which studies utilized which scale. These scales were also used to categorize participants in varying levels of health literacy proficiency. Instead of these scales, some studies had domain-specific questionnaires to assess change in self-management knowledge for various chronic diseases.

Table 2.

Scales and Questionnaires Used to Measure Health Literacy, eHealth Literacy, and/or Domain-Specific Knowledge

Measurement	Title of scale or questionnaire (reference)	Counts	N (n = 75*)
Health Literacy			18 (24%)
	Danish Test of Functional Health Literacy in Adults (TOFHLA) 25,26,30	3
	Health Literacy Questionnaire (HLQ) 16,55,61	3
	Single Item Literacy Screener 34,53,56	3
	Brief Health Literacy Screener (BHLS) 54,76	2
	Newest Vital Sign (NVS) 39,74	2
	Short Test of Functional Health Literacy in Adults (S-TOFHLA) 28,75	2
	European Health Literacy Survey Questionnaire (HLS-EU) 67	1
	Functional Communicative Critical Health Literacy (FCCHL) 57	1
	Rapid Estimate of Adult Literacy (REALM) 74	1
eHealth Literacy			29 (39%)
	eHealth Literacy Scale (eHEALS) 22,27,29,31,32,34,35,40–42,45,46,52,54,56,58–60,65,67–69,71–77	29
Domain-specific knowledge			28 (37%)
	Researcher-designed knowledge assessments using expert knowledge or evidence-based guidelines 11–13,17–20,36,38,43,47–51,62,64–66,68–70	22
	Brief Estimate of Health Knowledge and Action-HIV (BEHKA-HIV) 74	1
	Bristol COPD Knowledge Questionnaire (BCKQ) 14	1
	Crohn's and Colitis Knowledge Score (CCKNOW) 37	1
	Diabetes Knowledge Questionnaire 24	1
	Rheumatoid arthritis knowledge questionnaire designed by Arthritis Community Research and Evaluation Unit (ACREU) 33	1
	Short Diabetes Knowledge Instrument (SKDI) 63	1

^*Total number of measurements does not match up with total number of studies since not all studies had a quantitative measurement, and some studies used more than one measurement

One study compared two versions of the European Health Literacy Survey (a six-item version and a 16-item version) among asthma patients to determine if the versions would produce similar results. Using the six-item version would be beneficial over the 16-item version in time-restricted clinical settings.⁶⁷ Although the researchers found that the two versions were highly correlated (r = 0.93), the researchers concluded the questionnaires were not interchangeable due to high standard deviations between mean differences of the two scores. Furthermore, the researchers discuss a loss of “both information and … theoretical scope” when using the six-item version compared to the 16-item version.⁶⁷

Where do systems find help with health literacy?

Theme 3: Health system-driven interventions use evidence-based guidelines to curate material presented in health literacy interventions.

Health literacy interventions conducted within health systems are usually done in partnership with researchers from a university or medical school through academic medical centers.^{11–21,23–25,28,30,33,36–38,42–44,47–51,53,55,57,61–66,68,74} Researchers develop educational material using their own domain expert knowledge or evidence-based guidelines approved by a governing body. Evidence-based guidelines are sometimes referred to as clinical practice guidelines, and the Institute of Medicine defines clinical practical guidelines as “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances”.⁷⁸ Studies use this material to develop educational content for their health literacy intervention. For example, Williams et al. conducted a study evaluating the feasibility, cost-efficiency, and acceptability of webinars to educate patients with irritable bowel syndrome (IBS).⁶⁶ Information from the webinar came from the 2016 British Dietetic Association evidenced-based practice guidelines for diet management for adults with IBS. Nearly all of the participants rated this webinar as having accurate and reliable information and reported having more knowledge of IBS post-webinar. Participants felt more confident in managing their condition post-webinar compared to pre-webinar.⁶⁶ Another example of a health literacy intervention was a web-based epilepsy education program for children with epilepsy and their parents.⁶⁵ Content for the website was pulled from trusted websites such as the National Institute for Health and Care Excellence and the Scottish Intercollegiate Guidelines Network which publish epilepsy guidelines. Parents and children with epilepsy reported the website as having high quality content and being highly user-friendly. Furthermore, statistical analysis within the experimental group revealed both parents and children with epilepsy had an increase in measures such as eHealth literacy and epilepsy knowledge after the intervention.⁶⁵

Theme 4: Health systems encourage active stakeholder participation in the development of health literacy interventions.

Some health literacy interventions conducted within health systems involved potential stakeholders in the development of the health literacy interventions.^{17,18,23,49,53,55,64,65,70,74} Examples of potential stakeholders include clinicians, community health workers, other health professionals, patients, and friends or family members of the patient. These approaches may be referred to in the literature as participatory design or community-based participation research.

Examples of how researchers involved stakeholders in development of health literacy interventions include conducting stakeholder interviews, co-developing the educational curriculum or pretesting the intervention tool with stakeholders. For example, Banbury et al. described the co-design process of the Telehealth Literacy Project, a health literacy intervention focused on chronic disease self-management and social support for older people through group videoconferencing.⁵⁵ The design process involved consultation with telehealth nurses and case managers who worked together to identify barriers to health literacy and strategies to induce change. After these consultations, healthcare professionals led a trial patient education session delivered via group videoconferencing.

Meetings were conducted with the patients to obtain feedback over the trial patient education session. Patients expressed a preference for connecting with others over self-managing chronic disease, but acknowledged potential technical issues. This feedback was incorporated into developing the course content and technical logistics for the intervention. After conducting the intervention, researchers found changes in health literacy were not substantial, but patients reported successful development in social connections which led to the patients feeling more confident in the self-management of their chronic disease.⁵⁵

What health literacy interventions are used within health systems? If they exist, how do they operate to meet consumers' needs?

Theme 5: Health system-driven health literacy interventions are delivered in multiple forms of technology.

Appendix A includes information about the purpose, intervention tool, methodology, and results of the health system-driven health literacy interventions. Examples of how these interventions were delivered include webinars, in-person group education sessions, one-on-one coaching, mobile applications, web modules, DVDs, patient portals, phone calls, or decision aids. In one study, a group of researchers evaluated the effects of a mock web portal on patient knowledge and perceptions of pharmacogenomics.⁶⁴ For this intervention, the mock web portal displayed pharmacogenomics results for varying medications. The mock web portal utilized traffic light iconography, allowing patients to easily identify their risk for a medication. Statistical analysis of the knowledge assessment indicated the two study groups evaluating the portal experienced an increase in pharmacogenomics knowledge after the intervention. No differences in score changes existed between both groups. However, all patients had a positive perception of the pharmacogenomics after viewing the mock web patient portal and expressed interests such as providing test results to their providers or encouraging family and friends to get pharmacogenomics testing.⁶⁴

Theme 6: Social support activities such as group-based education or one-on-one consultation with an expert are utilized in health system-driven health literacy interventions.

Several studies incorporated social support within their health literacy intervention to facilitate engagement and knowledge acquisition.^{14–16,18,21,23,25,26,30,44,55,57,63,74} Examples of these activities included group-based interactive education sessions or one-on-one consultations with experts such as nurses, health students (PharmD and RN candidates), medical students, and community health workers. For example, one qualitative study involved an intervention where community health workers delivered one-on-one diabetes self-management education at the homes of patients.⁴⁴ The American Public Health Association defines a community health worker as a “frontline public health worker” connected to the community served. A community health worker acts as a liaison between health services and the community improving access to health services with a focus on increasing cultural competency and quality of the service delivery.⁷⁹ Based on the patient's questions and interests, community health workers went beyond the six required education modules and assisted the patient in various activities such as enrolling in SNAP benefits or formulating an action plan. The community health workers provided in-depth education to the patients about diabetes self-management and nutrition, connected participants to community resources, and assisted patients in navigating the healthcare system. The researchers concluded community health workers could engage with the patients in a unique valuable way unreplicable within the primary care clinical setting due to time restrictions.⁴⁴

Another health literacy intervention involving community health coaches was the Support via Telephone Advice and Resources (STAR-MAMA) study involving low-income, postpartum minority women who had prior gestational diabetes mellitus.²³ The health literacy intervention was an automated telemedicine self-support system over diabetes topics supplemented by a health coach. This health coach called the women once a week and connected them to community resources such as community programs, food banks, mental health support groups, and others. Case studies of the mothers indicate health coaches were able to provide relevant education and support over postpartum care while connecting mothers to new primary care providers and community programs such as food banks and Women, Infants, and Children (WIC) Program clinics.²³

What gaps in health system driven interventions are unanswered?

Theme 7: Patients report a lack of confidence in assessing the quality of information on the internet and using this information to make health decisions.

In studies where eHEALS was used to measure eHealth literacy, participants expressed concern over distinguishing high-quality health resources from low-quality health resources and using this information to make health decisions. ²², ³¹, ³², ⁴⁰, ⁴⁵, ⁵⁹, ⁶⁰, ⁶⁷, ⁷⁰, ⁷¹ Furthermore, a qualitative study where researchers interviewed patients with systemic sclerosis revealed pain points in their experience in using the internet to find information over systemic sclerosis.⁷⁰ As stated by the researchers, systemic sclerosis is a rare multisystem autoimmune disease targeting connective tissue. These patients reported the need to be guided in evaluating the reliability of information being presented on the internet.⁷⁰

Theme 8: Studies show statistically insignificant changes between intervention and control groups, despite patients reporting positive experiences with a health literacy intervention.

Although the majority of the studies in our review reported statistically significant increases in knowledge and/or health literacy levels post-intervention within the intervention group, some studies report no statistically significant differences between groups. ¹², ¹⁴, ¹⁷, ²⁰, ²⁵, ³⁰, ³⁷, ⁴⁸, ⁶², ⁶⁴ Statistical results for all health literacy interventions can be found in Appendix A. Of the 16 interventions conducting a between-group analysis with intervention and control groups, 10 of them reported insignificant changes in health literacy levels and/or domain-specific knowledge between groups.¹², ¹⁴, ¹⁷, ²⁰, ²⁵, ³⁰, ³⁷, ⁴⁸, ⁶², ⁶⁴ For example, a group of researchers in South Korea led a health literacy intervention evaluating the effects of ubiquitous healthcare (uHealth, where uHealth is a combination of terms such as “telemedicine,” “telecare,” and “eHealth” in South Korea). The intervention targeted patients with chronic obstructive pulmonary disease (COPD) on their knowledge, skills, and attitudes .¹⁴ All patients received uHealth devices for telemonitoring, but two of the three groups received additional teleconsultation to provide patient education over COPD. Although all three groups had statistically significant increases in self-management knowledge post-intervention, the differences between the three groups were statistically insignificant. The researchers hypothesized the lack of statistical significance between the three groups could be due to factors such as external sources of communication and information, time constraints in delivering information, and the lack of a control group. Despite the lack of statistical significance between the three groups in self-management knowledge, the majority of patients reported “satisfied” or “very satisfied” experiences with the uHealth devices .¹⁴

Theme 9: Health literacy screening assessments are not an established part of the hospital intake process.

All of the studies found in this literature review sample patients who have an identified chronic disease. Health literacy screening assessments such as the NVS and TOFHLA were used on these patients. The list of all screening assessments used can be found in Table 2 mentioned in Theme 2. However, none of the studies in this literature review described using health literacy screening tools as a way to identify all patients with limited health literacy in a health system.

Discussion

An analysis of the studies in this review led to the identification of nine themes which could be utilized in the development of future health system-driven health literacy interventions.

The review identified patients with chronic diseases as the target population for these health literacy interventions within health systems. More specifically, some examples of these chronic diseases are COPD, prostate cancer, arthritis, human immunodeficiency virus (HIV), epilepsy, and diabetes. It is important to recognize the growing prevalence of chronic disease worldwide, which was estimated to increase 57 percent in 2020.⁸⁰ In 2018, it was estimated at least 51.8 percent (approximately 129 million) of adults in the US had been diagnosed with at least one chronic condition, such as arthritis, cancer, COPD, asthma, diabetes, or stroke. Furthermore, chronic diseases have an impact on healthcare costs. According to the CDC, chronic diseases and mental health account for an estimated 90 percent of $3.8 trillion (approximately $3.2 trillion) of yearly healthcare expenditures.⁸¹ With that being said, it is beneficial for patients with chronic disease to participate in health literacy interventions as they can increase health literacy levels and build preventive health practices and health promoting behaviors.⁸² As a result, it could lead to the prevention of hospital readmissions and lower costs. In fact, one five-year study showed providing patient education using a teach-back approach led to a net savings of $675 per patient, per year, along with a 32 percent decrease in hospitalizations .⁸³

To design effective health literacy interventions for chronic disease, it is important include an effective and sustainable self-management plan. Aria and Archer report on the lack of studies evaluating intervention sustainability. They found a systematic review reporting that only one of seven studied cardiovascular disease self-management programs lasted as long as one year.⁸⁴ Furthermore, they acknowledge the complexity of chronic self-management and constructed a conceptual model to demonstrate this complexity. They describe a patient-centered approach in which patients are engaged in self-monitoring, self-care, adherence, and decision support. External influences to support and sustain patients on this self-management journey include family and community support, education and training, and some form of intrinsic or extrinsic motivation to maintain sustainability of the plan. ⁸⁴ This complex self-management model is consistent with other models such as that proposed by Dunn and Conard.⁸⁵ Dunn and Conard propose a new chronic disease self-management model focused on functional and critical health literacy skills. More specifically, the model focuses on components of health literacy such as reading and comprehension, numeracy, navigation, communication, and ultimately decision-making. Furthermore, this model must be inclusive of all patients, regardless of delivery, which could vary from in-person education sessions or a smartphone application.⁸⁵ To determine the best-fit approach delivery mode for this model, needs assessments and interviews can be conducted with patients to identify pain points navigating the healthcare system and preferences in health information delivery.

From the studies included in this literature review, nine different general health literacy scales were used to either categorize patients in ordinal categories of health literacy or assess changes in health literacy knowledge. It is clear no standard health literacy assessment was used across all health literacy interventions. Further inspection of each scale shows the scales are used to test different components of health literacy. For example, the NVS is a clinical assessment used to test prose literacy, numeracy, and document literacy.⁸⁶ On the other hand, the REALM is a word recognition test and does not assess a patient's comprehensions of medical concepts.⁸⁷ To design an effective health literacy intervention, it is important to pick a scale which will assess the skills and knowledge developed by the intervention. Also, domain-specific knowledge assessments can be used in conjunction with health literacy measures to assess specific knowledge concepts over domains such as a specific chronic disease.

All eHealth literacy interventions in this review used the eHEALS, a reliable tool to capture eHealth literacy concepts.⁸⁸ However, research indicates a lack of validity, as correlations between eHEALS scores and performance tests were weak and nonsignificant.⁸⁹ This finding suggests eHEALS can be used a screening tool to quickly assess eHealth literacy levels, but it cannot objectively measure skills as described by the concept of eHealth literacy. Furthermore, research shows eHealth literacy differs between general health literacy, as no relationship exists between eHEALS and NVS.⁹⁰ When designing eHealth literacy interventions, eHEALS should be used in conjunction with a reliable and validated health literacy scale such as NVS or TOFHLA to assess changes in patients' reading comprehension and numeracy skills.

It is not surprising to see evidence-based guidelines used to develop the content presented in health literacy interventions. However, it is important to assess patient trust in health information and who is delivering this health information. A meta-analysis of patient trust in healthcare professionals shows higher trust levels are associated with improved clinical outcomes, such as higher quality of life, high satisfaction in treatment, and beneficial health behaviors compared to levels of lower trust in healthcare professionals.⁹¹ In terms of the relationship between health literacy and how health information is trusted and used by individuals, it was found that those with lower levels of health literacy are less likely to trust specialized information coming from doctors than individuals with higher levels of health literacy.⁹² Instead, individuals with limited levels of health literacy are more likely to trust information coming from other sources such as friends, blogs, and social media. Health literacy interventions should teach individuals how to evaluate health information quality.

Within health systems, the development of health literacy interventions is fostered by an active participation of stakeholders, such as clinicians and sample patients. In the research setting, this type of relationship could be described as patient and public involvement (PPI) where patients and/or public community members work with researchers in developing and implementingresearch.⁹³ Using PPI in research allows researchers to identify and understand patient needs and problems, which informs the design and content of the health literacy intervention. A mapping review of PPI in health literacy interventions conducted by Wilsher et. al. found 20 out of 96 studies involved patient and/or public involvement in at least designing, managing, or evaluating the intervention.⁹⁴ Some specific impacts noted by the researchers that PPI had on these 20 studies included an increased confidence to communicate with medical professionals, as well as meeting unmet needs only discovered by involving patients in the intervention development. An example of PPI within the US may be referred to as community-based participatory research. Community-based participatory research can be described as “an approach in which researchers undertake research in partnership with those affected by the issue being studied, for the purpose of taking action or effecting social change”.⁹⁵ Applying community-based participatory research in health literacy interventions allows strategies such as co-learning, solving problems of local relevance, and building sustainability within the community.⁹⁶ These strategies will foster patient engagement and create an effective health literacy intervention pertinent to the community.

Health literacy interventions found in this literature review were delivered in different forms of technology such as patient portals, text messages, DVDs, webinars, mobile applications, health coaches, or decision aids.^{11–21,23–25,28,30,33,36–38,42–44,47–51,53,55,57,61–66,68,74} These interventions were delivered in person, on the phone, or remotely. Although these health literacy interventions increased health literacy levels significantly after the intervention, the focus of an intervention should be on content and not delivery method. Referring back to the model proposed by Dunn and Conard, an effective model for chronic disease self-management should focus on health literacy content and building skills to make effective health-related decisions.⁸⁵ However, Dunn and Conard do note investments in the tool technology and educational resources will only increase the model's effectiveness.⁸⁵ Nonetheless, the mode of delivery should be informed by patient needs and preferences for health information delivery as patients will be using the tool. Iterative design could be a potential method in developing the tool as it involves cyclic process of prototyping, testing, and refining the tool based on evolving patient needs and preferences.

The literature review revealed two forms of social support in the form of group-based education with other patients or one-on-one consultation with an expert. Within this literature review, community health workers were showcased as a valuable source to providing patient education and connecting patients to community resources. New research has identified the functions and roles community health workers fill in primary care.⁹⁷ Examples of these functions include: health coaching; providing social support; case management; and health literacy support, which allow them to fill roles such as clinical services; community resource connections; and health education and coaching.⁹⁷ Furthermore, incorporating social influence in clinical interventions can influence health outcomes. For example, one meta-analysis revealed psychoeducation or familial-based interventions had a more positive effect on health outcomes than standard treatments.⁹⁸ Another study showed health literacy and perceived social support was associated with higher levels of self-care behaviors in adults with heart failure ⁹⁹. These studies show the potential effect social support may have on health outcomes in health literacy interventions. Although it may not be feasible in all interventions, incorporating social support within a health literacy intervention may be beneficial in maintaining sustainability for self-management behaviors for a chronic disease.⁸⁴

This literature review revealed three unanswered gaps within health system-driven health literacy interventions, which are: (1) lack of patient confidence in understanding and using health information from the internet; (2) studies document positive experiences with health literacy interventions, but not all show statistically significant results between intervention and control groups; and (3) health literacy is not assessed within the clinical workflow of health systems. For the first unanswered gap, the internet has become the first source of health information for many patients.¹⁰⁰ However, the internet may not be a reliable source of information. A meta-analysis evaluating the overall quality of online health information for patients shows a majority of the websites were rated as “poor” to “good” quality ¹⁰¹. It is not surprising patients report a lack of confidence in evaluating health information from the internet. Further research must be done in order to assess how health literacy interventions can assist patients in appraising health information on the internet in order to make evidence-based health decisions.

For the second unanswered gap, statistically insignificant results between the intervention and control groups could be attributed to many factors outside of a given intervention. These factors include study design, sampling design, or external factors outside of researcher control. For example, randomized clinical trials testing new tools or interventions are not always able to employ a blinded study design. Control patients receiving usual care are aware of their placement and may unconsciously look for quality sources of information to educate themselves over the tested content. As a result, this activity could introduce bias and skew the results. Another reason why statistically insignificant results occur between the control group and intervention group is the effect of the intervention is not effectively captured by the health literacy tool used in the study. It is imperative for researchers to use or develop a scale appropriately evaluating skills and knowledge taught by the intervention. Other ways to define meaningful changes in health literacy could be qualitative interviews over the patients' experience of the health literacy intervention. Nonetheless, a majority of the studies found in the literature showed statistically significant increases in health literacy and/or knowledge within groups after the intervention. These results show the intervention has some positive effect on health literacy levels.

For the third unanswered gap, clinical workflow systems do not utilize health literacy screening tools to identify patients with limited health literacy. All of the studies found in this literature review deal with patients with chronic diseases who have identified needs. However, this observation means there is a lack of health screening tools being incorporated into the clinical workflow to identify any patient with limited health literacy. Research shows higher levels of health literacy is associated with at least a reduction in the occurrence of comorbid conditions.¹⁰² The researchers hypothesize patients with an initial chronic disease are motivated to become health literate in order to learn and practice self-management behavior. This leads to a protective factor against developing comorbidities. Incorporating health literacy screening assessments within the clinical workflow can allow for the identification of patients with limited health literacy. By identifying these patients, health systems can be proactive in preventing chronic disease development and issue tailored information to varying levels of health literacy. This process could be administered in a two-step process in a similar manner as the Patient Health Questionnaire (PHQ), such as PHQ-2 and PHQ-9. The PHQ-2 is a quick screening assessment for depression, whereas the PHQ-9 is used on patients who screened positive on the PHQ-2 to determine if they meet the criteria for depressive disorders.¹⁰³ Two studies reported health literacy screening assessments (e.g., BHLS and Rapid Estimate of Adult Literacy in Medicine – Short Form [REALM-SF]) can be implemented in a feasible manner into clinical assessments and documented within the electronic health record.¹⁰⁴, ¹⁰⁵ Future research is needed to determine how screening assessments can be implemented across all health systems and their impact on clinical outcomes and distribution of patient education resources.

This literature review has several limitations. First, it may not have captured all relevant articles related to health literacy interventions within health systems using the PubMed database. The search strategy should be evaluated to see if it could be improved upon to capture more studies. Second, only PubMed was used to identify these interventions. Other databases should be incorporated to capture other studies not present in PubMed.

Conclusion

In summary, patients with chronic disease were identified as major targets for health literacy interventions within health systems. Regardless of candidacy, health systems should incorporate health literacy tools within the clinical workflow to screen all patients for limited health literacy. Thus identified, patients with limited health literacy can work with a health system on increasing their levels of health literacy. Furthermore, social support and/or stakeholder management are methods used by health systems to facilitate patient engagement with health literacy interventions. When designing health literacy interventions, researchers should ensure their assessment accurately measures the effect of the health literacy intervention when assessing changes in health literacy between groups. These findings extend knowledge about health literacy interventions within health systems which can be used to inform future development of health literacy interventions.

Author Biographies

Michael Truong (mikeydtruong@gmail.com) is a graduate student at The University of Texas Health Science Center at Houston pursuing a dual-degree in public health and biomedical informatics.

Susan H. Fenton (susan.h.fenton@uth.tmc.edu) is an associate professor and associate dean of academic and curricular affairs at The University of Texas Health Science Center at Houston School of Biomedical Informatics.

Sponsored by the AHIMA Foundation with support from Anisa Tootla and Megan McVane, LCSW.

Appendix A: Summarization of Health System-Driven Health Literacy Interventions

Author(s) (Reference)	Publication Year	Purpose	Intervention Type	Subjects	Outcomes	Brief Methodology	Results
Kobak et al. 11	2011	• Evaluate efficacy and user satisfaction of a Web-based version of the Enhancing Interactions Program1	• Web-based tutorial and modules	• 23 parents associated with Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt Kennedy Center (Nashville, TN)	• User satisfaction scores and changes in knowledge about autism concepts	• Web tutorial had three main modules over autism impact on behavior, promoting skill acquisition, and how to improve functional communication skills for the child	• Parents had a significant increase in mean number of correct items (p < 0.05) • Tutorial was rated as highly usable and user-friendly
Schweickert et al. 12	2011	• Evaluate the effectiveness of telehealth education in comparison to the traditional in-person stroke prevention education	• Telehealth video conferencing technology	• 11 elderly rural individuals in Virginia who were at risk for stroke (Appalachian region of Virginia)	• Changes in satisfaction, knowledge, and likelihood of making behavioral changes to reduce vascular risk factors	• In-person group received 20-minute session about symptoms and risk factors of stroke • Telehealth group received same content over video conference • Test scores were used to compare between both groups	• No significant differences between telehealth and in-person groups for all outcomes • Both groups experienced significant knowledge increase post-intervention
Eaton et al. 13	2012	• Evaluate the effectiveness of online information session in comparison to the traditional in-person information session over bariatric surgery	• Information session in-person or online	• 338 patients receiving bariatric surgery at Johns Hopkins Academic Medical Center (Baltimore, MD)	• Primary outcome: differences between test scores for online and in-person groups	• Both sessions: a presentation about bariatric surgery procedures and its risk and benefits, requirements to enroll in program, and steps to be approved by insurance • Online sessions: They receive quiz but they can view the presentation multiple times • Knowledge assessment score was compared between groups	• Online group had significant better average test score (85.69 versus 80.32) than in-person group (p < 0.05)
Kim et al. 14	2012	• Evaluate impact of uHealth2 services of patient's knowledge	• Telehealth (remote consultations), telemedicine (remote	• 144 older South Korean patients at a South	• Changes in patient's knowledge, skills, and	• uHealth program had 3 major services	• Significant increase in knowledge about self-management (p < 0.05)
		about COPD, self-management, uHealth device usage skills, and attitude towards device • Compare effectiveness of voice through mobile phones versus video services through video phones	monitoring), and eHealth (mobile phone)	Korean university-affiliated hospital (Seoul, South Korea)	attitudes about uHealth and COPD	• Daily self telemonitoring for COPD symptoms • Teleconsultation to provide knowledge on COPD self-care • Mobile phone (audio) or video phone (video) was used for teleconsultation • Test scores were compared between 3 groups (Group 1 only received uHealth devices; Group 2 received the devices, plus mobile phone; Group 3 received devices, plus video phone)	pre-test and post-test within groups, but differences were statistically insignificant between groups • All groups showed statistically significant differences in using the uHealth devices with an increased confidence (p < 0.05)
Leung et al. 15	2012	• Collect pilot data on health coaching and medication adherence in hypertensive patients • Demonstrate feasibility and acceptability of intervention for patients and coaches • Provide example of incorporating student health care into a primary care team for hypertensive patients in a low resource, multicultural clinical setting	• Student health coaches	• 25 hypertensive patients at Rhode Island Free Clinic (Providence, RI)	• Blood pressure, medication adherence, frequency of blood pressure monitoring at home, healthy behavior • Patient satisfaction and feasibility of student coach model	• MD, PharmD, or RN candidates volunteered as health coaches and were trained by multidisciplinary team of healthcare professionals in various topics such as documentation, patient education, patient counseling, and medical care in Spanish • Patients were matched with health coaches; health coaches reviewed various clinical measures such as medication status, barriers to adherence, explaining proper blood pressure monitoring, and encouraging patients to engage in 1 lifestyle goal • Health coaches followed up with 20-minute calls every other week to gather more data and assess progress towards lifestyle goal	• 12 patients completed intervention; only significant increases in medication adherence (p < 0.05) and reduction in systolic blood pressure was observed (p < 0.05) • Patients reported the intervention had a positive effect on self-efficacy, knowledge, and being motivated to pay more attention their condition
Banbury et al. 16	2014	• Examine acceptability of multi-site videoconferencing to provide group education in their homes	• Group education using video conference technology	• Rural northern New South Wales, Australia; My Health Clinic at Home (not-for-profit community care center) telehealth project	• Identify themes related to acceptability of multi-site videoconferences	• People were grouped according to health literacy levels • Time slots were allocated for meetings each week • Aspects of health literacy and chronic disease self-management were issued • Active participation through discussion and shared experiences	• Qualitative analysis shows video conference usage was easy to use • Participants felt connected due to shared experiences over group conferences • Participants valued meeting others and felt confident in reflecting on health problems
Heisler et al. 17	2014	• Compare effectiveness of iDecide (tailored interactive diabetes medication decision aid) to traditional print consumer booklets	• Interactive diabetes medication decision aid application	• 188 participants affiliated with community health center in Detroit serving a Latino and African American low-income population (Detroit, MI)	• Primary: Changes in knowledge about anti-hyperglycemic medication, patient-reported medication decisional conflict, and satisfaction with anti-hyperglycemic medication information • Secondary: Changes in diabetes distress, self-efficacy, medication adherence, and A1C	• iDecide was developed using community-based participatory research methods • Two groups: traditional content and iDecide both delivered by community health workers (CHW) • Traditional group: CHW delivered informational print booklet with text, graphics, and tables • iDecide group: CHW provided motivational interviewing to encourage action plan development; application provided information tailored to patient-reported data and clinical information • Questionnaire scores were used to compare both groups	• Both groups had significant within-group improvements between baseline and 3 months in all primary outcomes (p < 0.05) • Significant improvements in secondary outcomes were observed within all groups besides diabetes distress for the print materials group (p < 0.05) • No significant differences between groups for improvements in knowledge or decisional conflict; clarity and helpfulness of information was greater in iDecide than print material
Ma et al. 18	2014	• Develop and evaluate a culturally and linguistically	• In-person educational session	• 247 participants affiliated with 11 Chinese	• Changes in average mean score on clinical	• CBPR used to develop intervention; 2 members from each CBO trained to become	• 15 out of 21 questions measuring clinical trial knowledge showed
		appropriate community-based educational intervention to increase knowledge of and intent to participate in cancer clinical trials among underrepresented Chinese Americans		community-based organizations (CBO) • in partnership with Center for Asian Health at Temple University (Philadelphia, PA)	trials knowledge assessment	CHWs on cancer clinical trial information, awareness, and participation • Education session provided information about cancer clinical trials, stages of clinical trials, benefits and risk of participating in a trial, and how to protect oneself • Knowledge assessment was used to compare knowledge increase within group	significant improvements (p < 0.05) • A multivariate linear regression model showed education as a significant predictor of clinical trial knowledge (examples of insignificant variables include gender, annual income, year lived in the United States
Magee et al. 19	2014	• Evaluate survival skills education program on diabetes knowledge, self-reported medication adherence, and endpoint of ED visits plus hospital admissions	• Bedside education at urban teaching hospital in US	• 125 patients with confirmed diabetes condition	• Changes in average mean score on Diabetes Knowledge Survey and medication adherence on Morisky Medication Adherence Scale	• Education content aligned with American Diabetes Association and The Joint Commission suggested key areas such as defining glycemic conditions, how to prevent, recognize, treat these conditions, and managing sick days and hospital visits • Patients viewed content areas about recognizing and managing glycemic conditions on DVD before taking a post-test Diabetes Knowledge Survey • Licensed nurses and trained research assistants supervised the study • Changes in knowledge was assessed within group	• Significant increase in number of correct answers on diabetes knowledge survey after intervention (p < 0.05) • Increased odds of participants being highly adherent to medication after intervention was sustained at 3 months • Reduced emergency department and/or hospital admissions after the intervention for uncontrolled diabetes
Sheridan et al.20	2014	• Examine the independent effects of the decision aid on patients' knowledge, accuracy of risk perception, decisional conflict,	• Decision aid	• 160 patients at an internal medicine practice (Chapel Hill, NC)	• Changes in patients' knowledge, accuracy of risk perception, decisional conflict, values clarity, patient-provider interactions,	• 2 groups: no decision or decision aid • Decision aid had 3 modules over individualized risk assessment • Knowledge survey was provided to only the group receiving decision aid	• Within decision aid group: knowledge of effective CHD prevention strategies increased (p < 0.05) and increase in the accuracy of perceived CHD risk (p < 0.05)
		values clarity, patient-provider interactions, and intentions for CHD risk reduction			and intentions for CHD risk reduction		• Between groups: decision aid group had more CHD prevention discussions with providers and improved perceptions of patient-provider relationships • Decision aid was rated to be easy to use and understand
Chiapponi et al. 21	2015	• Determined if Students Teaching Patients improves satisfaction and competences of students as well as improving patient participation	• In-person educational session	• 55 patients receiving surgery at the University Hospital in Madgeburg, Germany	• Patient's recollection of information about procedure • Student satisfaction with Student Teaching Patients	• Students interviewed patients at least 1 hour before surgery and they asked questions about the patients' understanding of the procedure and its risks • Students would teach patients if the patients could not recall relevant information	• 100% of patients reported feeling prepared and understood the information, but not all patients were able to recite vital information during the actual interview • Both patients and student doctors were satisfied with the interview and believed it would benefit both parties
Athavale et al. 23	2016	• Show unique model of health coaching low-income, high-risk postpartum women which has public health significance • Present current case studies of STAR-MAMA stories	• Showcase case studies and its relation to emotional, instrumental, and health literacy support by health coaches	• 86 women with gestational diabetes at key community sites in Sonoma County and San Francisco in partnership with Women, Infants, and Children (WIC) Program	• Showcase case studies and its relation to emotional, instrumental, and health literacy support by health coaches	• Intervention group received telemedicine self-support system on diabetes preventive topics and are matched with a health coach for longitudinal follow-up • Health coach followed up with participant over 20 weeks and offered support on relevant issues based on responses; health coach connected participant to community resources and health providers • Control group received education resource guide about	• 4 case studies were presented of participants who were at high risk for diabetes symptoms • Empirically, health coach connects women with critical resources • Some major themes highlighted by the cases studies are a need for improved resources for child care, goal setting, and action planning to improve physical activity,
						postpartum care for themselves and baby	and receiving reminders about the importance of screening for blood sugar
Cai and Hu 24	2016	• Examine effects of family-based self-management educational intervention of self-management in adults with type 2 diabetes	• In-person educational intervention about diabetes self-management	• 57 diabetic patients in Zhonghua Road in Wuhan, China	• Changes in body mass index, waist circumference, A1C levels, plasma lipid profile control • Changes in scores for diabetes knowledge, family support, self-efficacy, diabetes self-care activities, and health-related quality of life	• Type 2 diabetic patients were recruited and brought a family member as part of the study • Intervention group received 7 1-hour sessions over general information of diabetes such as diet, physical exercise, medication management, blood glucose check, and a self-management plan • Various techniques were used to increase self-efficacy such as role modeling, verbal persuasion, and performance accomplishment • A focus of the sessions involved family support, coping skills, and problem solving strategies • Control group received usual care by family physician • Questionnaire answers was used to compare between groups	• Intervention group had statistically significant improvements in A1C, body mass index, and waist circumference levels compared to the control group (p < 0.05) • Intervention group had statistically significant improvements in diabetes knowledge, family support, diabetes management self-efficacy, diabetes self-care activates, and both physical and mental health-related qualify of life compared to control group (p < 0.05) • Family members in the intervention group had statistically significant improvements in diabetes knowledge and both physical and mental health-related quality of life compared to control group (p < 0.05)
Korsbakke Emtekaer Haesum et al. 25	2016	• Evaluate effect of telehomecare and educational modules on levels of functional health literacy	• Telehomecare and education module	• 116 COPD Danish patients participating in telehomecare with Telecare North Project in	• Differences in functional health literacy score between groups • Potential associations between functional	• Intervention group received a tablet containing information on how to manage COPD with health data being collected and transmitted to healthcare personnel; nurses monitored and	• No significant difference between functional health literacy score of both groups (p > 0.05) • Overall model to predict health literacy was
				North Jutland, Denmark	health literacy and demographic characteristics	educated participants on how to use the tablet to measure vital signs • Demographic data was collected through an interview, and health literacy was determined using Danish Test of Functional Health Literacy in Adults	insignificant (p > 0.05) but significant associations included age, education, and years in rehab and/or exercise (p < 0.05)
Lilholt et al. (24)	2016	• Examine association between COPD patients' use of Telekit and their functional health literacy and the association between their use of Telekit and their specific technological communication skills	• Telehealth system for COPD management	• 60 COPD Danish patients participating in telehomecare with Telecare North Project in North Jutland, Denmark	• Potential associations between usage of telekit and functional health literacy and use of Telekit and specific technological communication skills	• Face-to-face interview conducted to conduct demographic questions • Functional health literacy measured using Danish version of TOFHLA; scores allow participants to be grouped in categories such as inadequate, marginal, and adequate levels • Non-standardized in-house questionnaire to assess usage of Telekit	• Majority of participants expressed the Telekit system was easy to use, gave them a sense of control, and provided greater awareness of COPD symptoms • Majority of participants had adequate levels of health literacy • For this study, functional health literacy score had no statistically significant effect on use of Telekit system in providing users a sense of freedom, security, and control, and greater awareness of COPD systems
Yehle et al. 28	2016	• Examine the effect of telemonitoring plus education by home healthcare nurses on HRQoL in patients with varying health literacy levels diagnosed with HF	• Telemonitoring and one-on-one education	• 35 participants using telehomecare in partnership with home care services of large Midwestern (Indiana) hospital system	• Changes in health-related quality of life	• Telemonitoring devices were installed in homes of participants which transmitted health data related to heart failure such as body weight and blood pressure • Participants were educated by home care nurses • Survey questionnaire containing demographic questions (S-	• Perceived health-related quality of life increased, but the changes were not statistically significant • No statistical significance relationship existed between health literacy and perceived health-related quality of life
						TOFHLA), Minnesota Living with Heart Failure Questionnaire (MLHFQ) was issued pre-test, but the MLHFQ was issued against post-test
Hæsum et al. (28)	2017	• Explore how the use of telehomecare over the span of 10 months affects functional health literacy levels for patients with COPD	• Telehomecare kit to remote monitor condition	• 90 COPD Danish patients participating in TeleCare North Project in North Jutland, Denmark	• Differences in functional health literacy between control and intervention group	• Intervention group received telehomecare kit and transmitted clinical data and vital signs once a week; nurses educated participants on the use of Telekit and about COPD • Control group received usual care • Test scores were used to compare within and between groups	• Between groups: no statistical significance difference existed between intervention and control group at follow-up after 10 months for functional health literacy score (p > 0.05) • Within groups: both groups experienced statistically significant increases in functional health literacy from baseline to follow-up (p < 0.05) • Educational level and age was found to be significant predictors of functional health literacy at the 10 month follow-up
Kennedy et al. 33	2017	• Compare telemedicine versus in-person delivery of inflammatory arthritis self-management educational program in terms of improving arthritis self-efficacy and knowledge, coping efficacy, illness	• Educational intervention about inflammatory arthritis via in-person or telemedicine	• 123 Canadian patients in Ontario, Canada affiliated with St. Michael's Hospital	• Primary outcome: differences in self-efficacy between telemedicine and face-to-face group • Secondary outcomes: differences in arthritis knowledge, coping efficacy, illness intrusiveness, and effective consumer	• In-person group: 1 day educational program over self-management of inflammatory arthritis was delivered to participants; content was a presentation, Q&A, case studies, and small group learning which incorporated aspects of patient education and problem solving • Telemedicine group: same as the in-person group but it was remote	• Participants in both groups experienced immediate similar increases in self-efficacy, arthritis knowledge, being an effective consumer
		intrusiveness, and effective consumer			between telemedicine and face-to-face group
Sundaresan et al. 36	2017	• Determine if decision aid reduces decisional conflict regarding participation in a RCT • Evaluate whether decision aid increased knowledge about RCTs and RAVES (Radiotherapy – Adjuvant versus Early Salvage, RCT for prostate cancer), improved attitude towards RAVES, decreased anxiety, improved decisional satisfaction, reduced decisional regret, and recruitment to RAVES	• Decision aid	• 129 patients from oncology centers across Australia and New Zealand	• Primary outcome: differences in decisional conflict between control and intervention groups • Secondary outcome: differences in knowledge and being recruited to the RCT between control and intervention groups	• Intervention group received information sheet about RAVES and decision aid booklet • Control group received information about RAVES and a blank notebook • Questionnaires answers used to compare outcomes between groups	• Over 6 months, decisional conflict was lower in the intervention group compared to control group (p < 0.05) • Knowledge about RAVES was significantly higher in intervention group compared to control group (p < 0.05) • No statistically significant differences between anxiety levels, attitudes towards RAVES, and decisional regret and satisfaction
Abutaleb et al. 37	2018	• Determine if delivery of educational messages through a mobile system for irritable bowel disease improves patients' specific disease-specific knowledge	• Educational texts sent over mobile phone	• 219 patients from University of Maryland Baltimore (UMB), University of Pittsburgh Medical Center (UPMC) and Vanderbilt University (VU)	• Changes in disease-specific knowledge of irritable bowel disease between telemedicine interventions and groups receiving standard care	• 3 groups: weekly telemedicine, biweekly telemedicine, and standard care • Educational texts about Crohn's Disease and irritable bowel disease were sent weekly or biweekly dependent on the group; standard care received education at clinic appointments • Demographic and clinical characteristics was assessed	• Between groups: telemedicine groups experienced a non-significant increase in disease-specific knowledge score compared to standard care group (p > 0.01) • Patients who had low baseline scores had greater improvements in
						• Self-efficacy, locus of control, disease knowledge (Crohn's and Colitis Knowledge survey) was assessed at baseline, 6 months, and 12 months	score over the course of the study (p < 0.01) • After adjusting for race, site, and baseline knowledge, differences in disease-knowledge score was not statistically significant across groups
Anderson et al. 38	2018	• Examined feasibility, acceptance, and impact of mHealth intervention among pediatric patients with sickle cell disease	• mHealth application	• 32 patients with sickle cell anemia at Duke University and affiliated medical centers (Durham, NC)	• Changes in adherence rates, disease knowledge, and quality of life	• All participants were presented the intervention which was an application combining in-person education sessions and remote daily monitoring of medication compliance; providers regularly texted supporting and reminding patients of medication adherence • Data collection included measures such as treatment adherence, disease knowledge, pediatric quality of life, demographic questions	• Final completion track was 10 out of 32 participants who met daily needs to tracking medication • Disease knowledge was a significant increase for all participants (p < 0.05) • Participants who completed the intervention reported better functioning related to sickle cell disease and lower pain impact than those who did not complete the intervention (p < 0.05)
Melholt et al. 42	2018	• Explore experience of cardiac patients' usage of telerehabilitation tool for recuperation after surgery • How usage of Web portal affected eHealth literacy skills of patients	• Web portal over recovering from surgery and rehabilitation	• 109 cardiac patients at Aalborg University Hospital and North Denmark Regional Hospital in Denmark	• Changes in eHEALS score • Impression of Web portal	• Survey questionnaire related to patient characteristics, use of technology, seeking health information and eHEALS scale was issued pre-test and post-test • After intervention, a survey about their experience with web portal was issued • Web portal was presented to participants who were in the process of rehabilitation; web portal various forms of media to	• Usage of Web portal was deemed easy to access and understand by participants; usage was low with 31/49 patients saying they rarely used it • Majority of patients relied on Google to search for health information • Patients preferred said they felt best by learning through pictures or videos
						communicate information about cardiac disease its treatment and adverse effect; suggestions for lifestyle changes were presented to the individuals	• eHealth literacy skills did increase after the project; high positive associations of eHealth literacy with frequent usage of computer and higher educational attainment
Ochalek et al. 43	2018	• Examine the impacts of novel mHealth application for on improving human immunodeficiency virus (HIV) and Hepatitis C (HCV) knowledge among individuals who are waitlisted for opioids agonist maintenance	• mHealth application	• 25 participants who reported opioid abuse activities at University of Vermont and affiliated medical center (Burlington, VT)	• Changes in knowledge about HIV plus HCV	• At baseline, educational intervention was 1 visit, interactive flipbook, and 15-minute video disseminating HIV and HCV information; participants used an interactive iPad app to take knowledge assessment (HIV/AIDS Knowledge Test) which provided corrective feedback and explanations for incorrect answers • Participants completed a visual analog scale evaluating perceived risk of disease knowledge and HIV and HCV risk behaviors • Knowledge assessment was taken again at weeks 4 and 12 of the 12-week intervention	• Significant increase in HIV and HCV from baseline (p < 0.05) • Rating on visual analog scale experienced similar significant increase (p < 0.05)
Silverman et al. 44	2018	• Analyze content of community health worker (CHW) visits and illustrate skills CHW can provide both providers and patients with chronic disease	• Navigator with community health worker	• 145 patients from partnership between large public hospital, Veteran Affairs center, and community health clinic in King County, Washington	• Major themes related to CHW home visits to low-income individuals with poorly controlled diabetes	• Two groups: home-based diabetes self-management intervention delivered by CHWs or usual care • CHWs reviewed 6 required education topics over diabetes with patients and could review additional information based on participants' interest, questions	• Major roles for CHW in this RCT were: educating participants about nutrition, self-management, and diabetes; connecting participants to community resources; and assisting participants navigate the healthcare system
						about SNAP benefits, and action plan for a health goal • Encounter forms summarizing the visit were analyzed for inductive content analysis to find themes
Böttcher et al. 47	2019	• Evaluate impact of personalized text message skin cancer prevention education approach on knowledge preventive knowledge and behavioral change compared with an e-learning education program and a control group	• Information delivered through face-to-face and text messaging or video delivery	• 137 patients received standardized sun protection trainings across German cities	• Sun protection knowledge score and sun protection behavior score	• All participants received brief training and skin examination by dermatologist • 3 groups were formed: intervention group 1 who received face-to-face training over sun protection and text message system training, intervention group 2 who watched a 16-minute video over sun protection, and a control group	• Both intervention groups showed short-term increases in knowledge compared to the control group • After a year, only the face-to-face intervention group had significant increase in knowledge compared to the control group • Sun protection behavior score increased in intervention groups, but it was not significant compared to the control group
de Leeuw et al. 48	2019	• Compare face-to-face information delivery versus no interactive video versus interactive video information delivery	• Information delivered either through video or face-to-face	• 157 patients at the Amsterdam University Medical Centers, VUmc University Amsterdam, The Netherlands.	• Primary outcome: levels of satisfaction • Secondary outcome: knowledge score	• Control group received standard care which involved a face-to-face intervention about prenatal screening and the consequences of a positive or negative test • Intervention group received the same face-to-face intervention and an additional video session over more prenatal screening information (e.g., chromosomal anomalies, screening vs diagnosing, limitations of ultrasounds); video session was either passive w/o interruptions	• No significant differences were found in satisfaction score between groups (p < 0.05) • Intervention group experienced significant increase in knowledge score compared to control group (p < 0.05)
						or interactive with mandatory questions
Doll et al. 49	2019	• Assess the knowledge, attitudes, and preferences of patients with the use of a decision aid over revascularization and coronary artery disease	• Decision aid	• 203 patients at an Academic cardiac catheterization laboratory in Durham, NC	• Outcomes for the pre-post analysis included validated measures of patient knowledge, decision-making preferences, treatment preferences, and decisional conflict • Outcomes for the randomized controlled study was concordance of patient preferences with delivered treatment at 3 months after angiograph	• Decision aid was developed at Duke University Medical Center and included text, images, and videos describing coronary artery disease, treatment options for coronary artery disease (PCI versus CABG versus medical therapy), and the risks and benefits for the various treatment options • Control group received standard care • Intervention group was presented the decision aid and answered the same questionnaire as the control group • Another RCT with the intervention group was conducted where preferences of treatment was shared or not shared with cardiologists integrating preferences if it was medically appropriate	• Patients preferred treatment with percutaneous coronary intervention compared with either medical therapy alone (63% versus 21%) or coronary artery bypass graft surgery (81% versus 7%). • Decision aid was associated with improved performance (p < 0.01) and greater interest in shared decision-making • Randomize controlled study demonstrated the feasibility of integrating patient preference information
Masoi and Kibusi 50	2019	• Assess the effectiveness of an interactive messaging alert system on improving knowledge of obstetric danger signs, improving individual birth preparedness and complication	• Text messaging alert system	• 450 pregnant patients in Dodoma Municipal of Tanzania	• Knowledge on obstetric and newborn danger signs • Knowledge about individual birth preparedness and complications readiness	• Control groups received standard care while intervention group received text messages about general health education over pregnancy danger signs and preparedness for birth	• Significant differences were seen between control and intervention group on knowledge for obstetric and newborn danger signs (p < 0.05) • Education was a significant predictor of having high knowledge for danger signs (p < 0.05)
		readiness practices among pregnant women in Dodoma Municipal					• Intervention group had higher levels of preparedness for birth than control group (p < 0.05) • Education was significant predictor of being prepared for birth (p < 0.05)
Moradi et al. 51	2019	• Evaluate the effect of using text messages on improving knowledge and preventive behaviors of foot ulcer infection in patients suffering from type 2 diabetes	• Text messages	• 160 type 2 diabetic patients in community health centers of Andimeshk City, Iran	• Knowledge and practice of diabetic foot care • Fasting blood sugar and hemoglobin A1C levels	• All participants received pre-test questionnaire about demographics, knowledge about diabetic foot ulcers, and behaviors for preventing diabetic foot ulcers • Intervention group received text messages about preventive behaviors	• Awareness of the patients related to diabetes foot care in the intervention group after the intervention significantly improved (p < 0.05) • Mean scores of preventive behaviors of diabetic foot significantly increased in the intervention group compared to control group (p < 0.05)
Pathak et al. 53	2019	• Test a modified cancer decision aid for rural populations through usability testing • Evaluate revised rural cancer decision aid on the impact of knowledge and decision outcomes within rural population	• Decision aid	• 31 cancer patients from a Simmons Cancer Institute (Springfield, IL)with satellite facilities in nearby cities	• Acceptability and usability of cancer decision aid • Knowledge and perspective of cancer clinical trials	• Usability test was conducted with individuals who reviewed the tool page-by-page, talking out loud about their likes and dislikes of the tool; individuals filled out questionnaires related to acceptability and usability of the decision aid • New individuals were recruited to test out the revised decision aid; participants completed a pre-test and post-test survey which contained questions about decisional conflict, self-efficacy, knowledge about clinical trials,	• Usability testing showed patients were satisfied with the decision aid and the tool had adequate usability • Revised decision aid had additional information about location, transportation, and different cancer types • Increased certainty about decisions and cancer clinical trial knowledge was seen after using the decision aid (p < 0.05);
						and attitudes toward clinical trials	no significant changes in self-efficacy and attitudes toward clinical trials
Banbury et al. 55	2020	• Create intervention for older people teaching health literacy, chronic disease self-management skills and social support • Evaluate intervention effectiveness for improving health literacy, chronic disease self-management and social support perception	• Telehealth education sessions	• 111 patients with chronic disease at Rural Northern New South Wales Australia; My Health Clinic at Home (not-for-profit community care center) telehealth project	• Health literacy level • Levels of self-management behavior, supports, and attitudes	• Control group was remotely telemonitored • Intervention group participated in needs assessment, providing user input into development of intervention, and then participated in the intervention • Intervention was 6 weeks consisting of education sessions over topics such as active self-management, self-monitoring, communicating with health professionals, evaluating health information, and care planning	• Significant differences were found in 5 questions of Health Literacy Questionnaire within the intervention group after the intervention (p < 0.05) • Significant differences were found in 2 questions of the Health Education Impact questionnaire within the intervention group after the intervention (p < 0.05) • 4 major themes were found from the interview and focus group analysis: (1) feeling socially supported and engaging in life, (2) health knowledge was gained and/or reinforced, (3) learned from others and developing insight, (4) feeling empowered and confident to engage in self-management
Dwinger et al. 57	2020	• Evaluate the effectiveness of	• Telephone health coaching	• German patients with chronic	• Quality of life health behaviors	• Control group received no coaching	• Groups were not statistically different
		telephone health coaching on patient-reported outcomes and health behavior for people living with chronic conditions in Germany		conditions who are enrolled with German statutory health insurance KKH	(alcohol consumption, medication adherence, exercise) • Patient activation, health literacy, depression and anxiety levels, and process of behavior change	• Intervention group received coaching conducted by 20 nurses trained in motivational interviewing; examples of covered topics were: being confident to change daily life behavior, shared decision making, and creating goals	regarding quality of life and health behaviors • Intervention group had significant differences between the control group for 6 outcomes: (1) physical activity hours/week (p < 0.05), (2) metabolic rate/week (p < 0.05), (3) measuring blood pressure (p < 0.05), (4) BMI (p < 0.05), (5) patient activation (p < 0.05), and health literacy (p < 0.05)
Knudsen et al. 61	2019	• Evaluate whether improvements in patient activation and health literacy competencies are similar in tele-rehab and hospital-based cardiac rehabilitation.	• Cardiac rehabilitation through in-person or tele-rehab	• 66 patients with ischemic or heart valve disease at Aarhus University Hospital in Denmark	• Patient activation as measured by Patient Activation Measure • Health literacy as measured by Health Literacy Questionnaire	• Intervention group received cardiac tele-rehab individually through telehealth which included sessions such as physical exercise, dietary coaching, education, and psychosocial support; participants were handed equipment for telehealth monitoring which would be used at home to measure clinical data such as blood pressure, body weight, exercise time • Control group received hospital-based cardiac rehabilitation (usual care) in a group-based setting which included activities such as education over diet and training sessions • Patient activation and health literacy (with emphasis on 3 questions HLQ33, HLQ64, HLQ95 was measured)	• Both groups experienced similar improvements in patient activation, no significant differences were found (p < 0.05) • HLQ6 had significant differences between both groups (p < 0.05) but there was no significant differences in HLQ3 and HLQ6
Murthy et al. 62	2020	• Evaluate impact of mMitra, mobile-based voice messaging service, on maternal health knowledge and antenatal care practices for low-income pregnant women in India	• Mobile-based voice messaging service	• 1,515 pregnant patients in Mumbai, India served by maternity home and health posts	• Change in anemia status • Maternal health seeking knowledge, attitudes and practices	• Intervention group received mMITRA which were audio voice messages covering content based on weeks of pregnancy; example of covered topics were nutrition, supplementation, HIV testing, sonography, danger signs, sanitation, and hygiene • Control group received no messages • Researchers collected data at baseline, postpartum, and when the baby turned 1 year old from both groups	• Anemia status could not be assessed due to missing data • Intervention group performed better than the control group on 4 maternal care activities: (1) receiving tetanus toxoid injection (p < 0.05), (2) consulting a doctor when bleeding/spotting (p < 0.05), (3) saving money for delivery expenses (p < 0.05), (4) delivering in the hospital (p < 0.05) • The control group did better than intervention group for resting regularly (p < 0.05), and having an at-home birth with skilled attendants (p < 0.05) • Within both groups, maternal knowledge improved, but there were no significant differences between both groups
Schnitzer et al. 63	2020	• Evaluate behavioral and educational group intervention for individuals with comorbid serious mental illness and diabetes on patient knowledge, motivation, skills,	• Educational group sessions	• 60 patients with diabetes and comorbid mental illness at a community mental health center near Massachusetts General Hospital (Boston, MA)	• Glycemic control measured by glycated hemoglobin (HbA1c) • BMI, blood pressure, lipids, physical activity, and diabetes knowledge and self-care	• 16 weekly 60-minute group meetings involving interactive education and problem solving were offered to participants; psychologist specialized in health behavior change for people with serious mental illnesses led the meeting; examples of topics covered include basic diabetes disease	• For participants who attended at least 1 session, improvements in Hb1Ac were seen (p < 0.05), BMI (p < 0.05), diabetes knowledge and self-care (p < 0.05)
		and self-efficacy for managing diabetes.				education, nutrition, exercise, stress management • Meetings also addressed individual barriers to eating healthy (e.g., living in food desert, lack of food storage) and exercise (e.g., living in unsafe neighborhood, paranoia) through group-solving exercises
Truong et al. 64	2020	• Build mock patient Web portal displaying results of pharmacogenomics analysis • Assess patient web portal's ability to disseminate test results and information to patients	• Patient portal	• 20 patients who are part of The 1200 Patients Project with the University of Chicago (Chicago, IL)	• Patient knowledge and perception of pharmacogenomics	• Web portal results were based on using traffic light methodology for showing results (green for favorable information, yellow for cautious information, and red for warnings)	• Both groups experienced significant increases in knowledge post-test (p < 0.05), but no significant differences were found between groups • Patients reported the Web portal encouraged them to provide test results to providers and/or friends and family, encourage friends to get pharmacogenomics testing
Tutar Güven et al. 65	2020	• Develop a Web-based epilepsy education program (WEEP) for youth with epilepsy and their parents, then test its contents, quality, and usability • Assess the knowledge, seizure self-efficacy, attitude, and eHealth literacy of youth with epilepsy and	• Web-based educational program	• 31 youth patients with epilepsy at Pediatric Neurology Department of a tertiary care hospital in Turkey (Antalya, Turkey)	• Children: epilepsy knowledge, self-efficacy, attitudes toward illness, eHealth literacy • Parents: epilepsy knowledge, anxiety, self-management, eHealth literacy	• Website content was developed using information from trusted websites and was evaluated for its quality and usability by experts and participants • Intervention group received access to the website over the span of 12 weeks and received weekly reminders to use the website • Control group received usual care • Children were issued questionnaires containing	• Website was deemed to have high quality and high usability • Mean knowledge, seizure self-efficacy, attitude, and eHealth literacy scores of youth with epilepsy in the intervention group had significantly increased after the WEEP (p < 0.05) • Parents in the intervention group had increases in knowledge,
		their parents to evaluate the efficacy of the WEEP				Epilepsy Knowledge Test, Seizure Self-Efficacy for Children, Child Attitude Toward Illness Scale, eHEALS • Parents were issued questionnaires containing Epilepsy Knowledge Test, Parental Anxiety for Scales, Pediatric Epilepsy Medication Self-Management Questionnaire	anxiety, self-management, and eHealth literacy (p < 0.05) • Youth in the control group had significant decreases in mean knowledge, and seizure self-efficacy (p < 0.05) • Parents had significant changes in mean knowledge and anxiety (p < 0.05)
Williams et al. 66	2020	• Assess the feasibility, acceptability and cost efficiency of using webinars to deliver first-line advice to patients with suspected or newly diagnosed IBS	• Educational webinars	• IBS patients from health systems around the United Kingdom in partnership with National Health Services	• Levels of knowledge, confidence, acceptability, and usage of healthcare services	• Webinar was developed using 2016 British Dietetic Association evidence-based practice guidelines for the dietary management of IBS in adults • Healthcare providers working with newly diagnose IBS patients distributed webinar links to them; webinar was also distributed through business cards and at talks	• 1,171 attendants completed pre-webinar survey and 443 attendants post-webinar survey • After viewing webinar, patients reported having more confidence in managing IBS (p < 0.05) and reported higher knowledge post-webinar (p < 0.05) • Patients correctly answered specialist dietitian would be appropriate healthcare provider to consult regarding IBS (p < 0.05) • Webinar introduction reduced number of dietician specialist referrals, saving clinical time and money
Chenneville et al. 68	2021	• Examine the impact of the Bijou program on health-related	• Self-paced Web educational module	• 29 HIV-positive patients receiving	• Knowledge, intervention acceptability,	• Bijou has 6 electronic self-paced modules about HIV-positive health; examples of topics	• Significant increases in HIV health literacy, general health and
		outcomes for YMSM living with HIV in a pilot study		services at an adolescent infectious disease clinic serving predominantly Black and African American, non-Hispanic young men (South Florida)	satisfaction, self-efficacy, eHealth literacy, and usability	include HIV health literacy, general health and wellness, personal growth, and problem solving • Bijou was presented to all participants who completed pre-test, post-test and a 3-month follow-up survey • Survey had questions related to Bijou-related knowledge assessments, eHealth literacy, usability of Bijou, and self-efficacy	wellness, personal growth, and managing HIV (p < 0.05) • Self-efficacy changes were not significant • Bijou was considered to be a usable and acceptable program despite participants not finishing it
Sanders et al. 74	2021	• Evaluate effects of peer-led intervention on health literacy, eHealth skills and numeracy among people HIV-positive	• Peer-led educational group sessions	• 359 HIV-positive patients from 4 Federally Qualified Health Centers (FQHCs), 4 hospital ambulatory care sites in the New York City metropolitan area, and Rochester, NY	• Patient activation • Health literacy, eHealth literacy, numeracy	• Control group received usual care • Intervention group were able to attend 6 weekly, in-person 60-minute sessions which were led by co-peers (patients with HIV who were trained by researchers); sessions addressed topics such as the basic information of HIV, using a personal health record, how to use the internet to find health information, and engaging with medical providers	• Intervention group had statistically significant improvements in eHealth literacy and HIV knowledge compared to the control group. • Intervention had the greatest impact on participants with the lowest levels of eHealth literacy at baseline. • No statistically significant changes were observed in general health literacy or numeracy in either group

¹ Enhancing Interactions: clinician-led program coaching parents to learn techniques dealing with challenging behaviors and skill development associated with autism

² uHealth encompasses telehealth, eHealth, telemedicine

^3,4,5 HLQ3: “actively manage my health”; HLQ6: “ability to engage with healthcare providers”; HLQ9: “understanding health information”