Health literacy (HL) thought leaders on the National Academy of Medicine’s Health Literacy Round Table are calling for a new standard definition of HL. Because there are too many definitions in play and researchers have a tough literacy task just to choose one. And because various experts have come up with too many piggy-back terms that connect specific content to the “central concept”. And since we can’t measure things like “basic information” and “appropriate decisions”.
New definition to include providers’ literacy, context, progress, action
The new definition would first and foremost acknowledge that HL is multidimensional, that is, two sided— including “both sides of the exchange”: literacy skills of individuals’ (patient or family members and “information providers”) on one side, and system demands and complexities on the other. The broadened perspective recognizes that healthcare professionals and other info-providers in insurance, pharmaceuticals and IT, like patients, have literacy skills. Those skills may or may not enable Those-Who-Know to understand what patients are saying or to communicate effectively.
Further, the proposed broadened view acknowledges the role of context — “the demands and complexities” of healthcare delivery and financing systems make it difficult for everyone to participate in and obtain the full benefit of healthcare, health promotion, health protection, and “health coverage” (I think that means insurance).
The new perspective embraces the notion of progress—well, shakes hands, at least. HL is described as a process or a pathway, implying that improvement is possible —although the document never uses those terms, referring instead to process and change. Nonetheless, this is a big step away from old evidence suggesting that adults rarely change their level of functional literacy, and the surprisingly wide acceptance of the inference that HL is a fixed individual trait.
Further, HL “operates” in various settings — healthcare, insurance and pharmaceutical organizations are mentioned. And it operates in various media, not just print.
Finally, the new definition will link decision and action. (Applause!). Another big step from “appropriate decisions” usually interpreted as compliance, to “informed action”, which may be against medical advice and still not indicate a cognitive deficit.
The Perspective, as the document is called, is indeed a welcome and overdue broadening of the dominant view of HL as seen from US academic medical centers. However, essential issues remain. Perhaps unresolved debates explain why a new definition is not proposed, only described by its components.
Health Literacy is multi-dimensional. Social dimension still missing
HL is not simply two sided. Literacy skills may be one dimension that exists on “both sides of the exchange”, but literacy itself is multidimensional. The missing dimension in health literacy as defined in the US, and still in the new perspective, is the social dimension.
Literacy is a social construct. Its meaning and measure are constantly evolving to reflect society. Literacy is different for different jobs, communities, goals, as well as for different genders, ages, cultures, times and places. In the same way, the meaning of health is also multidimensional, socially defined and evolving. Most healthcare decisions are made and acted on —or not— in homes and communities in everyday life, not by appointment in offices and hospitals.
At the intersection of health and literacy, it is not surprising to find a diversity of overlapping, sometimes conflicting, always evolving definitions and measures. Experts did not come up with a bunch of new terms to tie their favorite content to a clear central concept of HL — rather they recognized that the theory of multiple literacies for multiple contexts (financial literacy, computer literacy, Spanish literacy) applies to HL, too. So we have maternal HL, mental HL, oral HL, teen HL, LBGT-HL, health insurance literacy, and many disease literacies.
Alternative: new improved research approaches
Try as we might to make health literacy precise and clinical with biomarkers and specific corrective actions that produce predictable results demonstrated in randomized controlled trials, HL remains a social practice that is complicated, dynamic and messy. To understand and influence HL, the challenge is not to distill its meaning down to something easy to research, but to figure out how to research something messy.
Pleasant, A., R. E. Rudd, C. O’Leary, M. K. Paasche-Orlow, M. P. Allen, W. Alvarado-Little, L. Myers, K. Parson, and S. Rosen. 2016. Considerations for a new definition of health literacy. Discussion Paper, National Academy of Medicine, Washington, DC. http://nam.edu/wp-content/uploads/2016/04/Considerations-for-a-New-Definition-of- Health-Literacy.pdf.
Cook-Grumperz J (Ed). The Social Construction of Literacy, Second Edition Cambridge University Press
Excerpt free online: http://www.langtoninfo.com/web_content/9780521819633_excerpt.pdf