Interest and understanding of health literacy has grown tremendously over the last 20 years. The topic has been an enduring component of the Healthy People planning process, and Title V of the The Patient Protection and Affordable Care Act of 2010 defines health literacy as the degree to which an individual has “the capacity to obtain, communicate, process, and understand basic health information and services needed to make appropriate health decisions.”
NIH has supported health-literacy research during this time through investigator-initiated projects and with a series of special FOAs, Understanding and promoting health literacy, that have solicited applications from 2004 to the present. A visit to NIH RePORTER finds 536 health-literacy-related projects funded with $503,857,647. The field writ large and NIH-supported researchers have been so productive that, by October 2015, our PubMed citation service showed over 9,000 health-literacy research publications.
This literature demonstrates a robust conversation that goes far beyond understanding and promoting health literacy. It operationalizes and places health literacy in clinical, personal, and health-specific settings. The literature demonstrates that while health literacy may comprise an individual’s capacity, such capacity is constantly in flux given that individual’s milieu, or the group to which he or she belongs, the type of setting, and the wellness and/or disease issues faced by him or her at any given time.
Examples from recent publications of the contexts in which health literacy can vary and the populations in which it has been studied include groups of people ranging from older American Indian adults to teen mothers; multiple, age-appropriate cancer-risk age groups; diabetics with foot ulcers; (non-) adherent cancer, glaucoma, and HIV patients; physicians, nurses, practitioners, pharmacists, and those studying to become health practitioners. Settings in which health literacy has been studied include health-care system web portals, urban ethnic community settings, rural areas, WIC offices, Guyanese emergency departments, physicians’ offices, dental clinics, nursing stations, pharmacies, and family homes.
Given this complex set of circumstances that involve dynamic sets of people, much health literacy research involves a uniquely human behavior: communication - the symbolic means people use to describe themselves, their feelings, situations, issues to account for their behaviors and to induce recognition or influence among others (see Elwood, 1999). Scientific health-literacy articles on this topic focus on family discussions, language proficiency levels, self-reported literacy and numeracy abilities, patient-physician communication, prescription-dosing education, shared-decision-making processes, and negotiating processes to obtain informed treatment or research participant consent with patients across educational levels.
The literature also provides an array of sophisticated models for health literacy research that includes cultural-tailoring of interventions, social-network analyses, wait-listed randomized controlled trials, and the development and trials of new and existing tools to measure human health literacy—as well as whether and how health information is sufficiently clear so that typical patients are likely to understand it. Research also includes reliability and validity across patient populations, healthcare provider types, and health care organizations—it’s all there. Also present are unique studies that address complex health problems: for example, qualitative work to determine how best to improve prescription medicine adherence among people who take multiple scripts for multiple conditions.
When then Assistant Secretary for Health Howard Koh wrote the forward for the National Action Plan to Improve Health Literacy, he cited the aforementioned definition of “health literacy” and emphasized its importance “to the success of each interaction between health care professionals and patients—every prescription, every treatment, and every recovery.” He also wrote that “by focusing on health literacy issues and working together, we can improve the accessibility, quality, and safety of health care; reduce costs; and improve the health and quality of life of millions of people”. Similarly, the National Academies’ Roundtable on Health Literacy works to advance national “health care systems [that] are respectful of and aligned with people’s skills, abilities, and values…. to improve the health and well-being of all people.”
Simply put, one’s health literacy is a dynamic state of being that’s dependent on one’s experiences with wellness, health, and life. We have found wisdom in research conducted in applied settings. There also is wisdom in a recent article’s conclusions that the health-literacy/numeracy knowledge generated through specific research settings complicates the comparison, dissemination, and implementation of the findings and recommendations across topics.
It is likely that the health literacy field has grown exponentially. Some of its researchers believe this provides a compelling rationale for an academic association to shape future scientific endeavors. That potential development aside, this post introduces a series from NIH program directors who will comment on their past portfolios and provide research perspectives on a future that improves every human interaction that advances people’s health knowledge, skills, health status, and wellbeing.
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