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.^11–77 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.       

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.^{11–21,23–25,28,30,33,36–38,42–44,47–51,53,55,57,61–66,68,74} 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.^{22,29,31,32,34,35,39–41,46,52,54,54,56–60,67,69,71–77} 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.

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-man