The experts’ perspectives on domains, definitions and measurements of health literacy in chronic disease management

Health literacy is defined as a person’s skills to navigate and access health information and understand and interpret the information to make informed decisions about their health. Understanding what health literacy is and the impact it has on health outcomes are important for people who work in health promotion and chronic disease prevention and management. Health literacy skills are related to people’s interactions with care providers, health systems, and their broader socio-cultural network which make a single definition and measurement tool of health literacy difficult to create.

In May 2013, a group of health literacy experts, clinicians, and policymakers got together at an Expert Roundtable in Vancouver, BC. The purpose of this meeting was to review the current state of health literacy research and practice, and to make recommendations about improving its definition, what should be measured, and how to integrate these practices into chronic disease management.  Important observations were made by the participants. One observation put forward and supported by the roundtable was that both health and literacy are separate concepts that are always changing and shaped by socio-environmental factors. For example, cultural background plays a role when a patient brings their beliefs and personal values into their interpretation of health information. There was a lot of discussion about community influences and interactions on health, and the fact that most people do not make health-related decisions by themselves, but rather go to their interpersonal networks for advice. It was further noted that many still believed clinicians to be the most trustworthy source, but patients’ immediate informal network (friends, family, etc.) also impact how they understand and use health information. Also, in the age of Web 2.0 and social media, the system, providers and patients must understand information exchange online—requiring specific skills and access to technology. The roundtable agreed that health literacy is not only multidimensional but it changes over time because people’s priorities and purposes change related to their health and well-being.

Along with important discussion about the nature of health literacy, the roundtable also concluded that if we were to advance the field of health literacy to improve chronic disease management, we first need to accurately define each domain of health literacy: accessing, understanding, evaluating, communicating and acting on health information. With agreement about the different domains, the roundtable experts emphasized that we need to develop a measurement tool to allow health professionals to identify areas of health literacy that need improvement and produce positive health outcomes for patients. We know that people empower themselves in various ways and understand and manage their health by navigating many sources that we cannot capture in current measurement tools for health literacy. The roundtable agreed that over time, this tool might undergo modifications in terms of condition (specific), function (actions), and general (social) contexts. We are now taking the knowledge we obtained in this roundtable to develop an inclusive tool.  This tool will measure asthma and COPD patients’ abilities and skills to fully understand all aspects of their disease, aiming to capture the power of health literacy (to improve health and lower costs) in a large Canadian Institutes of Health Research funded study. This international team is working together to develop a functional skills tool to assess different factors that promote or prevent patients’ ability to navigate and access health information, and understand, evaluate, communicate, and use such information to improve their self-monitoring and self-care practices. Our anticipation is the proposed measurement tool will have implications for how healthcare providers identify social, environmental and personal factors that affect health literacy, and best support patients in managing their chronic condition.

Nimmon, L 1, Poureslami, I 2, Shum, J 2, FitzGerald, JM 2
1 Centre for Health Education Scholarship, University of British Columbia, Vancouver, BC, Canada
2 Respiratory Medicine Division, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada



Health literacy and chronic disease management: drawing from expert knowledge to set an agenda.
Poureslami I, Nimmon L, Rootman I, Fitzgerald MJ
Health Promot Int. 2016 Feb 11


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