Shifting Away from a Deficit Model of Health Literacy

The field of health literacy continues to advance in important ways. One of the most significant developments has been a shift in viewing health literacy based on an individual deficit model perspective to a more system-wide asset model. This involves recognizing the role of interventional support and health care system infrastructure to enhance health literacy at the individual, community, and clinical levels. This is not just a politically correct platitude but is a critical step in the evolution of the field of health literacy as we work together to find solutions. Taken together, the articles in this special issue help us to continue asking provocative questions about how best to inform, support, and care for individuals with a range of health literacy levels as well as transform health care and public health to benefit all members of our society.

This is the eighth special issue on health literacy that we have published in the Journal of Health Communication. These projects have been conducted in association with the Health Literacy Annual Research Conference (HARC). The lead sponsors of HARC VII in 2015 were the Agency for Healthcare Research and Quality (AHRQ), the National Institute for Minority Health and Disparities (NIMHD), and the Patient-centered Outcomes Research Institute (PCORI). This special issue opens with a commentary by Bridget Gaglio (2016) of PCORI discussing how health literacy is an important element of patient-centered outcomes research. The issue contains a series of articles related to genomic literacy that begin to provide an evidence base needed for the translation of genomics research to public health and clinical practice. Using data from the Health Information National Trends Survey (HINTS), Waters, Wheeler, and Hamilton (2016) examined how information seeking, information scanning, and key information processing characteristics were associated with endorsing a multifactorial model of cancer causation. Condit and colleagues (2016) used a survey of cancer genetic registry participants to study how different mental models reflect the role of research participants and their preferences for re-consenting. Allen, McBride, Balcazar, and Kaphingst (2016) provide a commentary that argues for the strategic role that the community health workforce could play in eliciting the public’s current understandings of genomics and health to foster broader genomic literacy among the public and buy-in from public health organizations.

Another set of articles informs how people access, process, and use health information and has several implications for intervention development and research. Dawkins-Moultin, McDonald, and McKyer (2016) present a framework that integrates principles of socio-ecology and critical pedagogy for health promotion and health literacy interventions. Waverijn, Heijmans, Spreeuwenberg, and Groenewegen (2016) pursue important questions about the role of social capital and health literacy among those with a chronic illness. A complex network of social factors can be related to health literacy and health behaviors. These relationships are examined in a study by Geboers, Reijneveld, Jansen, and de Winter (2016) who used a large sample from the LifeLines Cohort Study. Friis, Lasgaard, Rowlands, Osborne, and Maindal (2016) investigated the relationship between educational attainment and health behavior and the extent to which health literacy is a mediator. Levin-Zamir, Baron-Epel, Cohen, and Elhayany (2016) studied the association between health literacy and health behavior, socioeconomic indicators, and self-assessed health from a national adult survey in Israel. Koops van’t Jagt, de Winter, Reijneveld, Hoeks, and Jansen (2016) describe the development of a narrative and picture-based intervention intended to support older patients with limited health literacy when communicating during their primary care consultations. Ruiz and colleagues (2016) conducted a study to determine the association of graph literacy with the use of online personal health records. Dodson, Osicka, Huang, McMahon, and Roberts (2016) examined ways to support individuals receiving kidney dialysis and how identifying health literacy characteristics may help direct specific interventions to improve patient education and support. Scarpato and colleagues (2016) looked at the potential association between health literacy and surgical outcomes for patients undergoing radical cystectomy. Using a brief health literacy screening approach, Goggins, Wallston, Mion, Cawthon, and Kripalani (2016) examined how nurses recorded health literacy scores for patients with different characteristics.

A series of articles focuses on communication products and channels that are used to inform and educate the public. These articles provide insight regarding the extent to which health literacy needs and principles are considered when developing content. Meppelink, Smit, Diviani, and Van Weert (2016) used two independent surveys addressing Dutch web sites; they examined the influence of health literacy on information recall and attitudes. Wagner, Lindstadt, Jeon, and Mackert (2016) reviewed a range of federal and commercial web sites that provide information on medical devices to explore how well they adhere to health literacy guidelines and are informed by theoretical constructs. White et al. (2016) looked at perceptions of provider communication among vulnerable patients with diabetes and the influences of mistrust and health literacy.

Finally, a few articles in this special issue looked at the needs of special populations including individuals with visual and hearing impairments. As part of an observational study, Jaffee and colleagues (2016) explored associations between older adults’ insufficient vision and low health literacy and adverse outcomes after discharge, specifically falls and readmissions. Smith and Samar (2016) adapted three health literacy instruments for use by individuals who are deaf and hard of hearing to quantify adolescent’s health literacy levels. Sivakumar, Hanoch, Barnes, and Federman (2016) examined levels of health related knowledge among Medicare beneficiaries and their information needs.

This collection of articles represents the growing international scope of health literacy research and a broadening appreciation of the complex relationships that push us beyond simply identifying health literacy as a patient’s problem. Health literacy as a research and clinical endeavor should not shame or blame patients for having low health literacy as if they are the problem. The field needs to expand its understanding of the context in which people engage in health care and prevention and embrace ways not only to empower patients, but also to embolden health care providers and public health practitioners to markedly improve our communication skills and strategies, significantly expand our commitment to patient education and activation, and meaningfully promote shared decision-making and self-care while removing the tremendous amount of unneeded complexity that suffuses many aspects of health care and public health.

Indeed, the threat of unneeded complexity plays out as well in our research activities, influencing not only who participates in our scientific pursuits and the informed consent process, but even how we think about the projects themselves. Major initiatives in therapeutics and genomics will not reach their potential if their design and testing ignores health literacy. For example, without significant effort, personalized medicine will be personalized medicine for the wealthy and well educated. The field of health literacy is a lens through which all research with human subjects should be viewed. And it is a lens that is adjusting well to encompass not only the individual, but also the broader context in which we all live and learn.