Updating Health Literacy for Healthy People 2030: Defining Its Importance for a New Decade in Public Health.

CONTENT: Healthy People 2030, the fifth iteration of the Healthy People initiative, provides science-based national health objectives with targets to improve the health and well-being of Americans. For the first time since its 1979 establishment, the Healthy People framework aims to attain health literacy as an overarching goal and foundational principle to achieving health and well-being. Growing literature on health literacy describes it as a concept not solely reliant on individual capabilities but also on organizations' ability to make health-related information and services equitably accessible and comprehensible. PROGRAM: The US Department of Health and Human Services (HHS) updates the Healthy People objectives each decade based on the most current science. For the development of Healthy People 2030, HHS drew on recommendations from the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Secretary's Advisory Committee), an independent advisory committee of national health experts, to update the 20-year old individual-focused Healthy People definition of health literacy. HHS solicited input from members of the public and users on the proposed changes to that definition. IMPLEMENTATION: HHS published a Federal Register notice to solicit public comments, which were qualitatively analyzed by government staff. EVALUATION: The 2 separate analyses revealed plurality support for improving the definition to focus on both individual and organizational roles in health literacy. Results led HHS subject matter experts to update the definition to include definitions of personal health literacy and organizational health literacy. Healthy People 2030's expanded health literacy definition reflects the most current science and input from the Secretary's Advisory Committee, public comments, and HHS subject matter experts. DISCUSSION: The updated definition is intended to advance Healthy People 2030's health literacy goals particularly as more organizations in public health and other sectors acknowledge their role in the delivery of quality health information and services.

After The Demonstration: What States Sustained After the End of Federal Grants to Improve Children's Health Care Quality.

Introduction Under the CHIPRA Quality Demonstration Grant Program, CMS awarded $100 million through 10 grants that 18 state Medicaid agencies implemented between 2010 and 2015. The program's legislatively-mandated purpose was to evaluate promising ideas for improving the quality of children's health care provided through Medicaid and CHIP. As part of the program's multifaceted evaluation, this study examined the extent to which states sustained key program activities after the demonstration ended. Methods We identified 115 potentially sustainable elements within states' CHIPRA demonstrations and analyzed data from grantee reports and key informant interviews to assess sustainment outcomes and key influential factors. We also assessed sustainment of the projects' intellectual capital. Results 56% of potentially sustainable elements were sustained. Sustainment varied by topic area: Elements related to quality measure reporting and practice facilitation were more likely to be sustained than others, such as parent advisors. Broad contextual factors, the state's Medicaid environment, implementation partners' resources, and characteristics of the demonstration itself all shaped sustainment outcomes. Discussion Assessing sustainment of key elements of states' CHIPRA quality demonstration projects provides insight into the fates of the "promising ideas" that the grant program was designed to examine. As a result of the federal government's investment in this grant program, many demonstration states are in a strong position to extend and spread specific strategies for improving the quality of care for children in Medicaid and CHIP. Our findings provide insights for policymakers and providers working to improve the quality of health care for low income children.

Opportunities to Improve Informed Consent with AHRQ Training Modules.

BACKGROUND: Informed consent is a process of communication between clinician and patient that results in the patient's decision about whether to undergo a specific intervention. However, patients often do not understand the risks, benefits, and alternatives, even after signing a consent form. METHODS: Mixed-methods pilot test of two Agency for Healthcare Research and Quality (AHRQ) informed consent training modules implemented in four hospitals. Methods included staff and patient surveys, interviews, site visits, and pre- and posttests of the modules. RESULTS: A low proportion of clinicians reported using teach-back (40.0%) or high-quality decision aids (55.0%). Patients reported limited use of best practices, including being asked to teach-back (58.4%), having other options described (54.9%), viewing decision aids (37.4%), and finding the form very easy to understand (66.8%). Content of the training modules aligned well with identified deficiencies. Barriers to completing the modules included staff turnover, competing demands, and lack of accountability. Facilitators included committed champions with available time, motivation, and release time for staff to take modules. Knowledge increased for leaders (p <0.05) and staff (p <0.001) who completed the training modules. Hospitals reported the effects of piloting the modules included fostering dialogue and identifying opportunities for improvements, identifying and rectifying policy ambiguity and noncompliance, reinforcing the use of interpreter services, and using modules' strategies and tools to improve informed consent. CONCLUSION: Many opportunities exist for hospitals to improve their informed consent practices. AHRQ's two training modules, have face validity, addressed demonstrated deficiencies in hospitals' informed consent policies and processes, and stimulated improvement activity in motivated hospitals.

Using the Health Literacy Universal Precautions Toolkit to Improve the Quality of Patient Materials.

Patient materials are often written above the reading level of most adults. Tool 11 of the Health Literacy Universal Precautions Toolkit ("Design Easy-to-Read Material") provides guidance on ensuring that written patient materials are easy to understand. As part of a pragmatic demonstration of the Toolkit, we examined how four primary care practices implemented Tool 11 and whether written materials improved as a result. We conducted interviews to learn about practices' implementation activities and assessed the readability, understandability, and actionability of patient education materials collected during pre- and postimplementation site visits. Interview data indicated that practices followed many action steps recommended in Tool 11, including training staff, assessing readability, and developing or revising materials, typically focusing on brief documents such as patient letters and information sheets. Many of the revised and newly developed documents had reading levels appropriate for most patients and--in the case of revised documents--better readability than the original materials. In contrast, the readability, understandability, and actionability of lengthier patient education materials were poor and did not improve over the 6-month implementation period. Findings guided revisions to Tool 11 and highlighted the importance of engaging multiple stakeholders in improving the quality of patient materials.

Development and evaluation of CAHPS survey items assessing how well healthcare providers address health literacy.

BACKGROUND: The complexity of health information often exceeds patients' skills to understand and use it. OBJECTIVE: To develop survey items assessing how well healthcare providers communicate health information. METHODS: Domains and items for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Item Set for Addressing Health Literacy were identified through an environmental scan and input from stakeholders. The draft item set was translated into Spanish and pretested in both English and Spanish. The revised item set was field tested with a randomly selected sample of adult patients from 2 sites using mail and telephonic data collection. Item-scale correlations, confirmatory factor analysis, and internal consistency reliability estimates were estimated to assess how well the survey items performed and identify composite measures. Finally, we regressed the CAHPS global rating of the provider item on the CAHPS core communication composite and the new health literacy composites. RESULTS: A total of 601 completed surveys were obtained (52% response rate). Two composite measures were identified: (1) Communication to Improve Health Literacy (16 items); and (2) How Well Providers Communicate About Medicines (6 items). These 2 composites were significantly uniquely associated with the global rating of the provider (communication to improve health literacy: P<0.001, b=0.28; and communication about medicines composite: P=0.02, b=0.04). The 2 composites and the CAHPS core communication composite accounted for 51% of the variance in the global rating of the provider. A 5-item subset of the Communication to Improve Health Literacy composite accounted for 90% of the variance of the original 16-item composite. CONCLUSIONS: This study provides support for reliability and validity of the CAHPS Item Set for Addressing Health Literacy. These items can serve to assess whether healthcare providers have communicated effectively with their patients and as a tool for quality improvement.

Development of items to assess patients' health literacy experiences at hospitals for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospital Survey.

BACKGROUND: The complexity of health information frequently exceeds patients' skills to understand and use it. Improvement in hospital communication has the potential to improve the quality of care. OBJECTIVE: To develop a set of items to supplement the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospital Survey (HCAHPS) to assess how well hospitals communicate health information to inpatients. METHODS: We conducted an environmental scan and obtained input from stakeholders to identify domains and survey items, and cognitively tested the item set in English and Spanish. We administered the items to a random sample of adult hospital patients using mail and telephone data collection. We estimate item-scale correlations for hypothesized multi-item composites, internal consistency reliability for composites, correlations among composites, and regressed global rating of the hospital and a would you recommend the hospital items on HCAHPS existing core and the new composites to evaluate the unique contribution of each to these "bottom-line" measures. RESULTS: A total of 1013 surveys were obtained (55% response rate). With some exceptions, correlations between items and scales were consistent with the hypothesized item clusters. Three composites were identified: (1) communication about tests; (2) communication about how to care for self and medicines; and (3) communication about forms. CONCLUSIONS: This study provides support for the measurement properties of the HCAHPS Item Set for Addressing Health Literacy. It can serve as both a measure of whether healthcare providers in a hospital setting have communicated effectively with their patients and as a tool for quality improvement.

Developing and testing the health literacy universal precautions toolkit.

The health literacy demands of the healthcare system often exceed the health literacy skills of Americans. This article reviews the development of the Health Literacy Universal Precautions (HLUP) Toolkit, commissioned by the Agency for Healthcare Research and Quality and designed to help primary care practices structure the delivery of care as if every patient may have limited health literacy. The development of the toolkit spanned 2 years and consisted of 3 major tasks: (1) developing individual tools (modules explaining how to use or implement a strategy to minimize the effects of low health literacy), using existing health literacy resources when possible, (2) testing individual tools in clinical practice and assembling them into a prototype toolkit, and (3) testing the prototype toolkit in clinical practice. Testing revealed that practices will use tools that are concise and actionable and are not perceived as being resource intensive. Conducting practice self-assessments and generating enthusiasm among staff were key elements for successful implementation. Implementing practice changes required more time than anticipated and some knowledge of quality improvement techniques. In sum, the HLUP Toolkit holds promise as a means of improving primary care for people with limited health literacy, but further testing is needed.

How the U.S. Agency for Healthcare Research and Quality Promotes Health Literate Health Care.

This report traces the U.S. Agency for Healthcare Research and Quality's (AHRQ) strategic approach to promote health literate health care delivery systems. For almost 15 years, the AHRQ Health Literacy Action Plan has served as the framework for the Agency's efforts to: 1) Develop Measures; 2) Improve the Evidence Base and Create Implementation Tools; 3) Create and Support Change; 4) Disseminate and Transfer Knowledge and Tools; and 5) Practice What We Preach. Drawing upon its core competencies in data and measurement, practice improvement, and health services research, AHRQ accelerated the uptake of evidence-based health literacy strategies by health care organizations.

Association Between Parent Comfort With English and Adverse Events Among Hospitalized Children.

Importance: Children of parents expressing limited comfort with English (LCE) or limited English proficiency may be at increased risk of adverse events (harms due to medical care). No prior studies have examined, in a multicenter fashion, the association between language comfort or language proficiency and systematically, actively collected adverse events that include family safety reporting. Objective: To examine the association between parent LCE and adverse events in a cohort of hospitalized children. Design, Setting, and Participants: This multicenter prospective cohort study was conducted from December 2014 to January 2017, concurrent with data collection from the Patient and Family Centered I-PASS Study, a clinician-family communication and patient safety intervention study. The study included 1666 Arabic-, Chinese-, English-, and Spanish-speaking parents of general pediatric and subspecialty patients 17 years and younger in the pediatric units of 7 North American hospitals. Data were analyzed from January 2018 to May 2020. Exposures: Language-comfort data were collected through parent self-reporting. LCE was defined as reporting any language besides English as the language in which parents were most comfortable speaking to physicians or nurses. Main Outcomes and Measures: The primary outcome was adverse events; the secondary outcome was preventable adverse events. Adverse events were collected using a systematic 2-step methodology. First, clinician abstractors reviewed patient medical records, solicited clinician reports, hospital incident reports, and family safety interviews. Then, review and consensus classification were completed by physician pairs. To examine the association of LCE with adverse events, a multivariable logistic regression was conducted with random intercepts to adjust for clustering by site. Results: Of 1666 parents providing language-comfort data, 1341 (80.5%) were female, and the mean (SD) age of parents was 35.4 (10.0) years. A total of 147 parents (8.8%) expressed LCE, most of whom (105 [71.4%]) preferred Spanish. Children of parents who expressed LCE had higher odds of having 1 or more adverse events compared with children whose parents expressed comfort with English (26 of 147 [17.7%] vs 146 of 1519 [9.6%]; adjusted odds ratio, 2.1; 95% CI, 1.2-3.7), after adjustment for parent race and education, complex chronic conditions, length of stay, site, and the intervention period. Similarly, children whose parents expressed LCE were more likely to experience 1 or more preventable adverse events (adjusted odds ratio, 2.3; 95% CI, 1.2-4.2). Conclusions and Relevance: Hospitalized children of parents expressing LCE were twice as likely to experience harms due to medical care. Targeted strategies are needed to improve communication and safety for this vulnerable group of children.

Health Literacy in the Inpatient Setting: Implications for Patient Care and Patient Safety.

Health literacy plays a role in the events leading up to children's hospitalizations, during hospital admission, and after discharge. Hospitals and providers should use a universal precautions approach and routinely incorporate health-literacy-informed strategies in communicating with all patients and families to ensure that they can understand health information, follow medical instructions, participate actively in their own/their child's care, and successfully navigate the health care system. Interventions that incorporate health-literacy-informed strategies and that target patients/families and health care systems should be implemented to improve patient outcomes and patient-centered and family-centered care.

Organizational Health Literacy: Quality Improvement Measures with Expert Consensus.

BACKGROUND: Organizational health literacy (OHL) is the degree to which health care organizations implement strategies to make it easier for patients to understand health information, navigate the health care system, engage in the health care process, and manage their health. Although resources exist to guide OHL-related quality improvement (QI) initiatives, little work has been done to establish measures that organizations can use to monitor their improvement efforts. OBJECTIVE: We sought to identify and evaluate existing OHL-related QI measures. To complement prior efforts to develop measures based on patient-reported data, we sought to identify measures computed from clinical, administrative, QI, or staff-reported data. Our goal was to develop a set of measures that experts agree are valuable for informing OHL-related QI activities. METHODS: We used four methods to identify relevant measures computed from clinical, administrative, QI, or staff-reported data. We convened a Technical Expert Panel, published a request for measures, conducted a literature review, and interviewed 20 organizations working to improve OHL. From the comprehensive list of measures identified, we selected a set of high-priority measures for review by a second expert panel. Using a modified Delphi review process, panelists rated measures on four evaluation criteria, participated in a teleconference to discuss areas of disagreement among panelists, and rerated all measures. KEY RESULTS: Across all methods, we identified 233 measures. Seventy measures underwent Delphi Panel review. For 22 measures, there was consensus among panelists that the measures were useful, meaningful, feasible, and had face validity. Five additional measures received strong ratings for usefulness, meaningfulness, and face validity, but failed to show consensus among panelists regarding feasibility. CONCLUSIONS: We identified OHL-related QI measures that have the support of experts in the field. Although additional measure development and testing is recommended, the Consensus OHL QI Measures are appropriate for immediate use. [HLRP: Health Literacy Research and Practice. 2019;3(2):e127-e146.]. PLAIN LANGUAGE SUMMARY: The health care system is complex. Health care organizations can make things easier for patients by making changes to improve communication and to help patients find their way around, become engaged in the health care process, and manage their health. We identify 22 measures that organizations can use to monitor their efforts to improve communication with and support for patients.

Challenges optimizing the after visit summary.

BACKGROUND: The after visit summary (AVS) is a paper or electronic document given to patients after a medical appointment, which is intended to summarize patients' health and guide future care, including self-management tasks. OBJECTIVE: To describe experiences of health systems implementing a redesigned outpatient AVS in commercially available electronic health record (EHR) systems to inform future optimization. MATERIALS AND METHODS: We conducted semi-structured interviews with information technology and clinical leaders at 12 hospital and community-based healthcare institutions across the continental United States focusing on the process of AVS redesign and implementation. We also report our experience implementing a redesigned AVS in the Epic EHR at the Mount Sinai Hospital in New York City, NY. RESULTS: Health systems experienced many challenges implementing the redesigned AVS. While many IT leaders noted that the redesigned AVS is easier to understand and the document is better organized, they claim the effort is time-consuming, Epic system upgrades render AVS modifications non-functional, and primary care and specialty practices have different needs in regards to content and formatting. Our team was able to modify the document by changing the order of print groups, modifying the font size, bolding section headers, and inserting page breaks. Similar to other health systems, our team found that it is difficult to achieve some desired features due to limitations in the EHR platform. CONCLUSION: Health IT leaders view the AVS as a valuable source of information for patients. However, limitations to AVS modifications in EHR systems present challenges to optimizing the tool. EHR vendors should incorporate learning from healthcare systems innovation efforts and consider building more flexibility into their product development.

Integrating literacy, culture, and language to improve health care quality for diverse populations.

OBJECTIVE: To understand the interrelationship of literacy, culture, and language and the importance of addressing their intersection. METHODS: Health literacy, cultural competence, and linguistic competence strategies to quality improvement were analyzed. RESULTS: Strategies to improve health literacy for low-literate individuals are distinct from strategies for culturally diverse and individuals with limited English proficiency (LEP). The lack of integration results in health care that is unresponsive to some vulnerable groups' needs. A vision for integrated care is presented. CONCLUSION: Clinicians, the health care team, and health care organizations have important roles to play in addressing challenges related to literacy, culture, and language.

The Journey to Become a Health Literate Organization: A Snapshot of Health System Improvement.

A health literate health care organization is one that makes it easy for people to navigate, understand, and use information and services to take care of their health. This chapter explores the journey that a growing number of organizations are taking to become health literate. Health literacy improvement has increasingly been viewed as a systems issue, one that moves beyond siloed efforts by recognizing that action is required on multiple levels. To help operationalize the shift to a systems perspective, members of the U.S. National Academies of Sciences, Engineering, Medicine Roundtable on Health Literacy defined ten attributes of health literate health care organizations. External factors, such as payment reform in the U.S., have buoyed health literacy as an organizational priority. Health care organizations often begin their journey to become health literate by conducting health literacy organizational assessments, focusing on written and spoken communication, and addressing difficulties in navigating facilities and complex systems. As organizations' efforts mature, health literacy quality improvement efforts give way to transformational activities. These include: the highest levels of the organization embracing health literacy, making strategic plans for initiating and spreading health literate practices, establishing a health literacy workforce and supporting structures, raising health literacy awareness and training staff system-wide, expanding patient and family input, establishing policies, leveraging information technology, monitoring policy compliance, addressing population health, and shifting the culture of the organization. The penultimate section of this chapter highlights the experiences of three organizations that have explicitly set a goal to become health literate: Carolinas Healthcare System (CHS), Intermountain Healthcare, and Northwell Health. These organizations are pioneers that approached health literacy in a systematic fashion, each exemplifying different routes an organization can take to become health literate. CHS provides an example of how, even when the most senior leadership drives the organization to become health literate, continued progress requires constant reinvigoration. At Intermountain Healthcare, the push to become a health literate organization was the natural consequence of organizational adoption of a model of shared accountability that necessitated patient engagement for its success. Northwell Health, on the other hand, provides a model of how a persistent champion can elevate health literacy to become a system priority and how system-wide policies and procedures can advance effective communication across language differences, health literacy, and cultures. The profiles of the three systems make clear that the opportunities for health literacy improvement are vast. Success depends on the presence of a perfect storm of conditions conducive to transformational change. This chapter ends with lessons learned from the experiences of health literacy pioneers that may be useful to organizations embarking on the journey. The journey is long, and there are bumps along the road. Nonetheless, discernable progress has been made. While committed to transformation, organizations seeking to be health literate recognize that it is not a destination you can ever reach. A health literate organization is constantly striving, always knowing that further improvement can be made.

Health Literacy Universal Precautions Are Still a Distant Dream: Analysis of U.S. Data on Health Literate Practices.

BACKGROUND: Experts have recommended the adoption of health literacy universal precautions, whereby health care providers make all health information easier to understand, confirm everyone's comprehension, and reduce the difficulty of health-related tasks. The U.S. Department of Health and Human Services selected three health literate practices to track progress in the adoption of health literacy universal precautions. OBJECTIVES: This study sought to examine whether there has been an increase in the delivery of health literate care and whether recommendations for health literacy universal precautions are being followed. METHODS: This study used trend and multiple regression analyses of data from 2011 to 2014 from the Medical Expenditure Panel Survey, a national household survey. KEY RESULTS: The proportion of adults in the U.S. who reported receiving health literate care increased from 2011 to 2014, but fell far short of health literacy universal precautions recommendations of delivering health literate care to everyone. In 2014, 70% of the population reported their providers always gave them instructions that were easy to understand, but only 29% were asked to Teach-Back the instructions and only 17% were offered help with forms. Older, less educated, and racial and ethnic minority group members were more likely to report receiving health literate care than more advantaged groups. People who perceived their health and mental health as fair or poor were less likely to report receiving health literate care. CONCLUSIONS: Failure to adopt health literacy universal precautions in the face of the high prevalence of limited health literacy in the general population may perpetuate adverse health outcomes that are costly to society. Greater efforts should be made to increase providers' health literacy skills, particularly those who serve populations that are more likely to have limited health literacy, including those with poor health. PLAIN LANGUAGE SUMMARY: This study shows that some health care providers did not always check that their instructions were clear enough for patients to understand. Even fewer providers always offered help in filling out forms. People who were older, less educated, or members of racial or ethnic minority groups were more likely to be asked to confirm their understanding or be offered help with forms. More patients said that their provider was easy to understand, checked their understanding, or offered help with forms in 2014 than in 2011.

Management tools for Medicaid and State Children's Health Insurance Program (SCHIP).

Medicaid and the State Children's Health Insurance Program need analytic tools to manage their programs. Drawing upon extensive discussions with experts in states, this article describes the state of the art in tool use, making several observations: (1) Several states have linked Medicaid/State Children's Health Insurance Program administrative data to other data (eg, birth and death records) to measure access to care. (2) Several states use managed care encounter data to set payment rates. (3) The analysis of pharmacy claims data appears widespread. The article also describes "lessons learned" regarding building capacity and improving data to support the implementation of management tools.