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.

For the first time in 20 years, and with the launch of Healthy People 2030, the Healthy People initiative has expanded its definition of health literacy. The updated health literacy definition reflects recommendations from the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Secretary's Advisory Committee)1 and the inaugural inclusion of health literacy in Healthy People 2030's overarching goals and as a foundational principle.2 The expanded definition also represents a culmination of input from members of the public and users across the health spectrum and growing sentiment that addressing health literacy, a significant public health challenge,3–10 requires support at the organizational level. The Healthy People 2020 health literacy definition addresses an individual's capacity to understand health information; the Healthy People 2030 definition11 augments the Healthy People 2020 definition and recognizes that organizations play a role in bolstering health literacy by making health-related information and services accessible and comprehensible (Table 1). This article highlights the process, rationale, and implications of the expanded definition as we look toward a new decade of Healthy People.

TABLE 1. Healthy People 2030 Health Literacy Definitions^a.

Personal health literacy is 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.

Organizational health literacy is 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.

^aThe new health literacy definitions and a summary of the role of health literacy in Healthy People 2030 can be found on this webpage: https://health.gov/our-work/healthy-people/healthy-people-2030/health-literacy-healthy-people-2030

The Evolution of the Healthy People Definition of Health Literacy

The Healthy People initiative is run by the US Department of Health and Human Services (HHS) Office of Disease Prevention and Health Promotion (ODPHP), which is congressionally mandated to assist in the analysis of issues and problems related to health information.13 One way in which ODPHP fulfills this mandate is to support efforts to improve health literacy. For Healthy People 2010, the ODPHP examined the science and literature and sought input from private and public users regarding the inclusion of health literacy into Healthy People 2010. These efforts led to the health literacy objectives and the incorporation of health literacy with a definition based on the work by Scott Ratzan and Ruth Parker, who in the year 2000 wrote:

Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.14^(pvi)

Noting that reducing health literacy gaps “is essential to reduce health disparities,” Healthy People 2010 incorporated the objective to “Improve the health literacy of persons with inadequate or marginal literacy skills.”1 It also included objectives on provider communication that reflected that the health care system also would need to change to achieve Healthy People 2010's overarching goals of increasing quality and years of healthy life and eliminating health disparities. To help make progress on objectives relating to health communications, including the improvement of health literacy, an Healthy People 2010 health communications action plan was developed by subject matter experts from the federal government, academic institutions, and medical associations. Although the definition focused on individuals' skills, or lack thereof, the action plan for implementing the Healthy People 2010 health communication objectives recognized the need to reduce the literacy and other demands of the health care system and stated:

Healthcare and public health delivery systems are complicated bureaucracies .... Even highly motivated and educated individuals may find the systems too complicated to understand, especially when persons are made more vulnerable by poor health. Consequently, assessments of individuals' health literacy skills may actually reflect system complexity rather than individual skill levels.15^(p42)

The subsequent two decades have seen a growing appreciation among researchers for the larger societal and organizational contexts impacting health literacy. For example, Baker16 constructed a conceptual model showing health literacy as a product of individuals' capacities and the difficulty and complexity of written and spoken health messages. Paasche-Orlow and Wolf noted in their 2007 article on the causal pathways between health literacy and health outcomes that “Health literacy should be viewed as both a patient and a system phenomenon.”6 Parker and Ratzan, authors of the initial definition, noted in 2010, “Multiple sectors (including education, health, healthcare, businesses, and social services) have responsibility for reaching the vision of a health literate society.”17

Healthy People 2020 retained the health literacy definition from Healthy People 2010 and expanded its health literacy objectives to reflect organizations' role in improving patients' understanding of health information and services by focusing on patient-provider communication and quality digital tools. Progress on these was tracked by the Agency for Healthcare Research and Quality, which added to existing health literacy questions in its Medical Expenditure Panel Survey.18 Healthy People 2020 did not retain the Healthy People 2010 population-based health literacy objective, because the data source used to track progress, the National Assessment of Adult Literacy, had been discontinued.19

Toward Healthy People 2030

The launch of Healthy People 2030 marks the first time in the Healthy People initiative that health literacy is part of its framework. Attaining health literacy is recognized in both the Healthy People 2030 foundational principles and overarching goals as key to achieving health and well-being.2

While achieving the Healthy People 2030 health literacy objectives will require multisectoral efforts, the responsibility for shepherding the Healthy People 2030 health literacy objectives over the next decade rests with the Healthy People Health Communication and Health Information Technology (HC/HIT) Topic Area Workgroup, which consists of federal subject matter experts tasked with developing, monitoring, and assessing the Healthy People 2030 objectives relating to their topic area. The HC/HIT Workgroup will track 3 Healthy People 2030 core health literacy objectives that have been carried forward from Healthy People 2020 that focus on confirming patient understanding, improving patient-provider communication, and increasing shared decision making (Tables 2 and 3). In addition, the HC/HIT Workgroup will work on advancing developmental and research health literacy objectives, which entails generating evidence and finding data sources to track progress.

TABLE 2. About the Healthy People 2030 Objectives20.

Core objectives Most Healthy People 2030 objectives are core, or measurable, objectives that are associated with targets for the decade. Core objectives reflect high-priority public health issues and are associated with evidence-based interventions. Core objectives have valid, reliable, and nationally representative data, including baseline data from no earlier than 2015. If applicable, they have a measure of variability. Data will be provided for core objectives for at least 3 time periods throughout the decade.

Developmental objectives Developmental objectives represent high-priority public health issues that are associated with evidence-based interventions but do not yet have reliable baseline data. To become a core objective, a developmental objective needs reliable data.

Research objectives Research objectives represent public health issues with a high health or economic burden or significant disparities between population groups—but they are not yet associated with evidence-based interventions. Research objectives may also be added throughout the decade to address emerging issues. To become a core objective, a research objective needs reliable baseline data and associated evidence-based interventions. If a research objective evolves to meet these criteria, a Healthy People work group may propose to the Healthy People Federal Interagency Workgroup that it become a core objective.

TABLE 3. Healthy People 2030 Health Literacy–Related Objectives.

Core objectives Increase the proportion of adults who report that their health care provider always asked them to describe how they will follow instructions (HC/HIT-01). Reduce the proportion of adults who report poor patient and provider communication (ie, listening, explanations, disrespect, time) (HC/HIT-02). Increase the proportion of adults who report that their health care providers always involved them in decisions about their health care as much as they wanted (HC/HIT-03).

Developmental objectives Increase the proportion of persons who find their online medical record easy to understand (HC/HIT-D10). Increase the percentage of limited-English-proficient (LEP) adults who report that their doctors or other health providers always explained things in a way that was easy to understand.

Research objective Increase the health literacy of the population (HC/HIT-R01).

The Healthy People 2030 Health Literacy Definition Development Process

The inclusion of health literacy in the Healthy People 2030 framework led the Secretary's Advisory Committee to produce a Health Literacy Brief and recommend that Healthy People 2030 adopt a new, systems-based definition: “Health literacy occurs when a society provides accurate health information and services that people can easily find, understand, and use to inform their decisions and actions.”21

HHS formed a committee of federal staff (the Definitions Committee) to evaluate the Secretary's Advisory Committee's recommendations. The Definitions Committee reviewed the original Healthy People 2010 definition of individual health literacy with an appreciation for the considerable research, policy, and programmatic progress associated with it. The call for a dynamic, systems approach to health literacy by the Secretary's Advisory Committee also resonated with the Definitions Committee. The Definitions Committee considered 3 options: (1) maintaining the 2-decade-old individual-level definition; (2) adopting the suggested systems-level definition; or (3) combining the definitions.

The Definitions Committee designed a rigorous process to obtain input from and widely vet any recommended definitions with users within HHS and throughout the United States. This process involved internal discussions with other Healthy People Topic Area Workgroups and members of the HHS Health Literacy Workgroup to obtain their feedback regarding the original individual definition, the proposed systems definition, and suggestions for alternatives. The Definitions Committee also issued a Federal Register notice to solicit public comments between June 4 and August 5, 2019, on the proposed revision to the health literacy definition for Healthy People 2030. The 187 public comments were analyzed both internally and by an outside organization with experience analyzing Healthy People public comments. Results revealed support for the individual- and the systems-level health literacy definitions with a significant plurality favoring a combined approach. Public comments also included suggestions for improving both the individual and systems definitions.

These results reflected the health literacy literature from the past 2 decades that supported the conceptualization of health literacy as both an individual issue and a systems issue. The Definition Committee concluded that there is sufficient evidence that attaining the Healthy People 2030 overarching goal requires capturing, in a quantifiable way, both the elements of individual health literacy and the key organizational actions that align with individuals' health literacy needs. Therefore, the Definition Committee determined that Healthy People 2030 needed 2 definitions to measure and track each level of health literacy.

Responding to all the input received, the Definition Committee crafted 2 definitions for health literacy that complement each other in focus and scope. One definition describes what constitutes the abilities of individuals to make informed health decisions and actions. The second definition describes what organizations do to enable individuals to make informed health-related decisions/actions. Both the Healthy People HC/HIT Topic Area Workgroup and the HHS Health Literacy Workgroup reviewed and endorsed the definitions.

Benefits of Both a Personal and Organizational Focus on Health Literacy

Personal health literacy

Maintaining a skills-based definition that provides continuity with the concept that people possess a degree of health literacy that can be assessed at a given point in time will have a critical role in advancing health equity. The definition can aid the implementation of evidence-based interventions focused on ensuring equal access to information and services by those who face health literacy challenges. Moreover, the updates should prompt new ways of studying and promoting personal health literacy.

Changes from the old definition include (1) an emphasis on the use of health information and services, (2) a shift from appropriate decisions to informed decisions and actions, and (3) inclusion of a public health perspective whereby personal health literacy can be used to promote the health of others. Including a focus on taking health-related action may reinforce the idea that improving health literacy does not end when a person understands health information and how to use health services. People must be able to use the information and services to not only make decisions but also take action—whether at the health care provider's office, online at home, or in a public institution. The new definition also broadens health literacy from an ability to use health information and services on one's own behalf to an ability that can also further public health. For example, effectively comprehending health-related polices and services can impact voting,22 choosing where to live or which health care provider to see, or even assisting loved ones with individual health needs. The ability to understand health information and how to use health services is a key skill for those working at the community level to address social determinants of health that could be measured and targeted for improvement.

The new Healthy People 2030 health literacy definition in no way limits the use of existing health literacy measures23 or important work to improve personal health literacy, such as adhering to National Health Education Standards24 or expanding adult education and English Learner programs. Rather, it builds upon the old definition and encourages health literacy improvement efforts to address the skills that enable people to move from understanding to action and from their own health to the health of others.

Organizational health literacy

The adoption of a definition for organizational health literacy signals that personal health literacy is contextual and the responsibility for health literacy does not rely solely on the individual. The definition also points out that organizations must be equitable in how they address health literacy. By taking action to reduce the complexity of health information and health systems, with particular attention to the needs of diverse populations, producers of health information and services can contribute to the Healthy People 2030 overarching goal of attaining health literacy, eliminating health disparities, and achieving health equity.

Striving to become a “Health Literate Organization” can lead to positive outcomes. A growing body of health literacy intervention research shows promising results, especially for those with limited health literacy.2 Interventions that clarify and simplify health care terms and procedures can work in a medical setting: patients can become more active in caring for themselves, including using recommended preventive services, adhering to medication regimens, and managing chronic conditions.1 Shared decision making can enhance patient satisfaction, treatment adherence, and health status.1 Within the broader public health realm, organizations that produce health-related information also can work toward clear communication and cultural competency in an effort to make sure that key messages are equitably shared with underserved populations. For example, since 2000, federal agencies have had to ensure that those with limited English proficiency have “meaningful access” to the services provided by the agencies.25 Furthermore, the establishment of the HHS Health Literacy Workgroup in 2003 has been another way HHS has encouraged the importance of organizational efforts. The HHS Health Literacy Workgroup's mission is to create understandable and actionable health information; support and facilitate engaged and activated health consumers; and refresh the health literacy science base on a regular basis. Research has shown that health care organizations are actively trying to reduce health literacy demands.5,18,26,27 A standard definition for health literacy may further support such efforts.

The expansion of the health literacy definition to include an organizational definition is a natural extension of HHS' long-standing efforts to promote health literacy. Raising health literacy awareness among health professionals and organizations is a crucial component for helping individuals achieve positive health outcomes. As recognized in the National Action Plan to Improve Health Literacy (National Action Plan), “without clear communication, we cannot expect people to adopt the healthy behaviors and recommendations that we champion.”10 The National Action Plan emphasizes a multisector approach to ensure that appropriate health information helps people make informed decisions and that health services are delivered in ways that are easy to understand and that improve health, longevity, and quality of life.10 As organizational health literacy matures, the charge to the research community is to test additional interventions to improve organizational health literacy and develop measures to track its progress at the systems level. Some measures of organizational health literacy have already emerged.28 These developments could pave the way to assess national progress in organizations becoming health literate in the future.

Next Steps: Health Literacy After the Launch of Healthy People 2030

The launch of Healthy People 2030 marks the beginning of a new decade of health literacy improvement. Users, including the public health workforce, organizations, policy makers, and others, can help advance health literacy through the following steps:

• Using, disseminating, and implementing the expanded Healthy People 2030 health literacy definition to inform programs and policies at the individual and organizational levels.

• Using the Healthy People 2030 health literacy objectives as benchmarks.

• Supporting research and evaluation efforts that enhance the evidence-base for Healthy People 2030's developmental and research health literacy objectives.

• Creating programs and interventions for effective improvement strategies, measures, and implementation tools for improving personal and organizational health literacy.

• Incorporating health literacy strategies into the training of public health and health care professionals, such as implementing the Health Literate Care Curriculum.29

• Working with health care partners and multisectoral partners to integrate health literacy principles into policy.

• Engaging public and private partners in the work of increasing both personal and organizational health literacy.

Summary

Both personal and organizational health literacy can have a powerful effect on an individual's health. It can make the difference in understanding a diagnosis, treatment, or recommended lifestyle changes to lead active, healthy lives. The Healthy People 2030's revaluation of its health literacy definition builds on Healthy People's previous health literacy contributions to public health. The Healthy People 2030's 2 complementary health literacy definitions, which taken together constitutes health literacy, promise to continue Healthy People's positive influence on health and well-being in the United States.

• A definition of individual health literacy maintains continuity with previous research and updates and enhances the language to be inclusive of public health. It will serve as the necessary foundation for developing measures, survey tools, and a core Healthy People 2030 objective to track progress toward reinstating a Healthy People core objective of improving population-level health literacy.

• An organizational definition of health literacy reflects the field's recognition of organizations' responsibility to meet the needs of the public they serve. An increase in “health literate” organizations will be more likely to occur if a Healthy People 2030 core objective is established and measured and progress is tracked.

Together, the 2 health literacy definitions offer Healthy People 2030 users' measurable ways to track changes in the health literacy of the population and of organizations aligning their information and services with the health literacy skills of their clients. Given the centrality of health literacy to achieving Healthy People 2030 goals, these 2 definitions will help encourage the research, policies, and programs needed to eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.

Implications for Policy & Practice

• The expanded definition can increase awareness of the role various organizations hold in ensuring that individuals can access, understand, and take action on the health information and services they provide.

• With consensus on the Healthy People 2030 definition, public and private partners across sectors, including public health, health care, business, and education, can expand upon their approaches toward increasing health literacy for all.

• The updated definition may also help support efforts to integrate health literacy principles into policy.