For relevant background for this blog post – check out previous posts.
Healthy People* (HP) 2030 defines health literacy as multi-dimensional. Finally, the definitions have caught up with the field. The newly offered terms cover both personal and organizational health literacy as follows. Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. This is in line with an explicit HP2030 focus: eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.
So yes, health literacy is about a population’s skills (“individuals have the ability”), but more importantly in the work of health equity – health literacy is about the role and responsibility of systems (organizations) in creating demands that do (not) meet population skills and needs (“organizations equitably enable”). Absolutely, we need to work toward educational equity and create institutions that can provide what students need to develop to their full academic and social potential. At the same time, system demands far outweigh what the average U.S. adult can navigate.
Even people who on paper should be breezing through a system “made for them” struggle because health literacy is constantly in flux. It is affected by context (e.g. emotion, language, place) and across time (e.g. change in health or cognitive status). Take the case of having a child who is extremely sick. The stress and worry about your child’s health and/or whether you can pay the onslaught of bills that are sure to follow impact an individual’s health literacy. The setting and circumstances affect their ability to understand and act, even if they may have been able to comprehend and act in other settings and at other times.
The point is that health literacy is important for everyone at every point of contact in a health system, and beyond. Engaging Health Equity means considering health literacy across levels, time, and sector. Health literacy can be about individual skills certainly, but it is also, and perhaps more importantly, about the demand of a) materials and information (e.g. websites, health history forms, discharge instructions), b) provider/patient communication (e.g. pharmacist/patient interactions), and c) environments (e.g. health centers, hospitals, vaccination sites).
Likewise, since all policy is health policy, this extends to other sectors. For example, in school, there are the same levels of interaction: a) letters, emails, and special communications (e.g. Special Education Procedural Safeguards), b) teacher/student and teacher/parent interactions, and c) the school, district, and community education environment. Just as in health, the demands school systems place on students and families often far outweigh family capacity and skill.
Rigorous and plentiful research describes the relationship between the social determinants of health and health outcomes. As such, attention to literacy is health literacy in any sector and interaction – and it is health equity. Yes, we will continue to work on educational equity, which includes improving literacy skills of the U.S. population. Yet, there is no need to wait. Today we can begin reducing the system demands that make health, school, housing, and other sectors so difficult to navigate. The challenge is serious and the impact is real. Facilitators, rather than barriers, can create equitable processes, reduce burden, and create positive outcomes.
For example, a Walking Interview of a hospital or health center can reveal facilitators and barriers that can be addressed to ease system burden on users. It involves a Guide leading an Observer (who is new to the space) through a series of steps and questions that explore what it’s like to call by phone, navigate the website for something specific, like directions, arrive at the entrance, and journey to a predetermined destination in the facility.
Going through this process is often an “a-ha” for leaders and staff, because it exposes many truths that people familiar with the space might not notice. Perhaps the Observer notes that the process of finding and using the website directions are confusing or include out-of-date information. Or, for instance, the Observer notes a mismatch between the name of a place used in the directions (x-ray) and the name of that area on the lobby’s map (radiology). These barriers make it hard for people to literally and figuratively navigate to the place they need; they also create undue stress and frustration. Importantly, these laborious processes compound and unnecessarily create missed opportunities for action and care, on the part of professionals and patients.
Let’s stop focusing on system users (e.g. patients, families, students) as the problem and start focusing on the ways we can create a usable system.
Check out a few resources to learn more for action!
*Healthy People is the United States’ 10-year plan for improving the health of the U.S. population. Every decade, new goals and measures are recommended by content area experts for the initiative run by the U.S. Department of Health & Human Services.