Expanding the learning health system model to be health literate

Nearly nine out of ten adults struggle to understand and use personal and public health information [1]. Low health literacy is an economic burden for the USA, costing US$238 billion or more annually and representing between 7% and 17% of all personal healthcare expenditures [2]. In 2012, the National Academy of Medicine identified ten attributes that exemplify a health-literate healthcare organization, meaning an environment that enables people to understand, access and benefit optimally from the range of healthcare services [3]. Almost 10 years later, few, if any, healthcare organizations embody these key attributes. We can no longer focus on individuals' aptitudes but must recognize and address the “health literacy-related demands and complexities of our healthcare organizations” [3]. More recently, Healthy People 2030, the nation's 10-year plan to improve the health of all Americans, featured, for the first time, health literacy in its framework. Further, it expanded health literacy to include a new organizational component, recognizing the essential role healthcare organizations play in improving health literacy. If the demands of healthcare organizations can better align with an individual's literacy skills and abilities, language and culture, we can address many of the persistent obstacles to achieving health equity.

Achieving health literacy aligns with other proposals to create learning health systems (LHSs). Most recently, Bodenheimer and Sinsky expanded Don Berwick's Triple Aim of improving the care experience and the health of populations and reducing costs by adding a fourth aim, “improving the work life of healthcare clinicians and staff ... in order to succeed in improving population health” [4]. In doing so, they proposed that the Triple Aim should become the Quadruple Aim. As the nation grapples with advancing health equity and the underlying issues required to improve the health of all subpopulations, we believe it is time to address health literacy as the next leap forward in improving population health and advancing health equity and justice. Including health literacy as an objective in the LHS approach would transform the Quadruple Aim to a Quintuple Aim. The concept of a Quintuple Aim has been described in an Agency for Healthcare Research and Quality white paper, on redefining primary care, in which the fifth aim focuses on equity [5]. We posit that applying the ten attributes of a health-literate organization will address health disparities and social determinants of health and, therefore, is part of the path to achieving the Quintuple Aim. If health equity is an aim, however, we recognize that health literacy is a necessary but insufficient condition for achieving the Quintuple Aim. Nonetheless, if gaps in health literacy persist, there will always be groups that do not achieve the care they need, as certain groups are more likely to experience limited health literacy (e.g., adults over 65, racial and ethnic groups other than White, recent refugees and immigrants, people with less than a high school degree or equivalent, non-native speakers of English and people with incomes at or below poverty levels). Improving health literacy is on the critical path to health equity.

We propose that as the aims for improving healthcare have evolved, so also must the scope and focus of LHSs. The Agency for Healthcare Research and Quality LHS framework aligns with the ten principles described by the National Academy of Medicine for health-literate healthcare organizations. This alignment provides an opportunity to advance health equity and justice and continue maturing LHS capabilities. As detailed in Table 1, integrating these approaches yields an initial set of 25 leading practices for implementing a health-literate learning healthcare system. These practices are proposals, rooted in conceptual linkages between the attributes of a health-literate healthcare organization and the LHS principles. They illustrate how an LHS approach can amplify and mature efforts to build health-literate organizations.

The LHS model applied to the principles of building a health-literate healthcare organization can be transformative – capitalizing on the infrastructure already in place after a decade of LHS maturity and harnessing its tools to meet the challenges for the rising priorities of health equity and justice. However, realizing this vision requires addressing three needs.

First, there is a need to diversify the pool of LHSs. To date, LHS models have taken root in academic medical centers and large healthcare systems with the technological and human resources needed to implement rapid, data-driven transformation. However, smaller, nonacademic hospitals often have deeper connections in the communities they serve and, consequently, are vital drivers of change and progress in health literacy. This is particularly true for healthcare organizations serving marginalized or disenfranchised communities. Existing LHSs seek to serve diverse patient populations, but little attention has been paid to implementing the LHS model in a broader range of healthcare organizations. Progress requires concerted efforts to spread the LHS model to the full range of healthcare organizations. Furthermore, diversity and representation of the workforce within LHS will be key to continued maturation of the LHS model, particularly with respect to health literacy objectives. This creates the opportunity for partnerships between existing LHSs with sophisticated technical approaches to data-driven improvement and aspiring LHSs with strong relationships with the communities they serve. These partnerships can be mutually beneficial, as the adaptive or relational expertise of community-engaged organizations can help accelerate improvement in organizations lacking that capacity.

Second, there is a need for meaningful (valid, practical and actionable) metrics of health literacy capable of driving broader engagement and activation of patients and the healthcare workforce. Data are central to the LHS approach and while many measurement tools are available, much innovation is needed across a range of measurement types (e.g., patient experiences, care process, outcomes) and sources (e.g., self-report, electronic health record-based) to increase timely access to data and reduce the burden of data collection. Advances in measurement are needed to drive diagnostic tools for LHSs that can be used to find opportunities to improve health literacy, contextualized for different patient populations. Ideally, these diagnostic tools would link care outcomes, processes and health literacy in a logical causal model. For example, do we have subpopulations at higher risk for bad outcomes for care they access in our system? Are those differences in outcomes due to differences in care decisions and processes? Are any differences in care decisions due to lack of effective communication for understanding? A data-driven LHS model can apply this type of rigor to self-assessment, the improvement of health literacy and its impact on a wide range of patient safety, quality and equity issues (e.g., access to preventative services, management of chronic conditions, reduction of unnecessary hospital visits and readmissions, medication errors).

Third, there is a need to evaluate barriers and enablers of old and new interventions for driving change. Learning at the organizational level is a change management problem, which is notoriously difficult. Individual change solutions and broader learning processes must be implemented within a complex social and technical system that is resource constrained and struggling to meet many, often competing priorities. Implementation and organizational sciences provide rich frameworks and evidence bases from which to draw guidance, but a contextual understanding of how and when different strategies work will be needed. An analysis of barriers and enablers should be inclusive of healthcare workers seeking to communicate and engage in shared decision-making as well as patients seeking to act on information. If patient choices diverge from recommendations, the organization should consider other explanations than low health literacy (e.g., are their practical constraints experienced by the system or patients, or are recommendations inconsistent with personal or cultural values?). All healthcare organizations experience external pressure to improve safety, quality and equity while under increasing resource constraints (e.g., workforce shortages). However, improving health literacy should not be viewed as an additional burden but a means to managing the multiplying metrics organizations are held accountable to. By integrating health literacy within existing operational LHS structures and processes, the capacity should be augmented with a more engaged and informed patient population.

The LHS framework can also help mature and strengthen our approach to managing health literacy. Experiences during the pandemic have made salient the challenges of mis- and disinformation in health. Existing health literacy frameworks do not address these issues, as they focus on communicating to build understanding. While understanding is certainly critical, the current health information space requires attention to building the belief in the truth of the information and the trust in the health system that drive behaviors. Box 1 provides tangible and practical pathways that LHSs can focus on to improve health literacy by building shared understanding, belief and trust and understanding of what is driving care decisions.

The pandemic heightened the salience of the gaps in health literacy and made the need for accelerated learning processes clear. The journey toward health equity and justice will no doubt be long, and there are many lessons to learn along the way. The burden of that journey can be eased with the adaptation and adoption of a decade of innovation in LHS implementation [6]. Health literacy is on the critical path to equity and justice and a health-literate learning healthcare organization offers a structural approach to address health inequity.