The Challenge of Health Literacy and Digital Literacy Requirements for Participation
LITERACY REQUIREMENTS FOR PARTICIPATION__________________
For patients and consumers, effectively dealing with health information requires a number of competencies. These competencies, which constitute capacity to “obtain, process, and understand basic health information” are often referred to as “health literacy” (Ratzan & Parker, 2000, p. vi). Dealing with health information in the digital domain presents additional requirements (e-Health literacy).
The concepts of health literacy and e-Health literacy are complex and have no single agreed-upon definition, issues discussed at length in Part I: Chapter 3. Yet, if we think about them as a set of skills, they involve, among others, traditional reading ability and numeracy, understanding how to search and evaluate information, background science knowledge, and the ability to use computers and the internet.
Studies suggest that the level of health literacy in the US population is disconcertingly low. According to the most comprehensive 2003 US National Assessment of Adult Literacy (NAAL) (https://nces.ed.gov/naal/), only 12% of US adults have a “proficient” level of health literacy, while 14% are at the “below basic” level. NAAL’s methods of assessing health literacy are not perfect, and there is no corresponding national study on e-health literacy (more on that in Part I: Chapter 3). Yet, the list of skills and the statistics jointly show that entering the field of medical decision-making is not an easy task. Individuals like Tai Golesworthy, possessing the knowledge and skills to lead teams of engineers and physicians in medical discovery tailored to their specific medical requirements, are extremely rare and few people would dream of attempting such a collaboration. But even much simpler participatory medicine tasks, such as choosing between two treatment regimens, involve a lot of complexity.
Imagine a family faced with the situation in which Ashya King’s parents found themselves: dealing with multiple information streams and evaluating the pros and cons of conventional radiotherapy and proton beam therapy for their five-year-old. The information involved is complex and highly technical, with much specialized terminology and statistical data. There is uncertainty and disagreement among experts and among healthcare systems of different countries. In addition, the situation is emotionally charged, and the stakes are enormous. While we view participation in her or his healthcare as a patient’s right, the exercising of which has many benefits for the patient, it is also a burden and a challenge. People’s underlying competencies vary, and those who are in the greatest need (older adults, individuals with low socioeconomic and less than high school level of education, those in poor health) may have the greatest difficulty navigating and using health information. Understanding this, doctors and healthcare systems should not only welcome collaboration, but see it as their task to provide needed supports.