Health literacy: A missing piece of the puzzle in cancer care

Establishing survivorship care in a community-based center
Establishing survivorship care in a community-based center

With a transformation of the health care landscape underway and the focus on quality care and improved outcomes, considering the whole complex patient rather than simply addressing their disease or symptoms is imperative. Limited time for interaction between clinicians and patients and wide availability of information and resources allow patients to play a more active role in their care. Not only are they making more informed treatment decisions, but patients are also making decisions about their overall health care and well-being and managing their disease's effects and emotional impact on daily life.

Through an integration of efforts, patients are empowered to take ownership and responsibility for their own health, participate in the decision making process, and personalize the steps taken based on their individual needs and choices. Much more is expected of the patient: self-assessment of health status (eg, side effect and adverse event recognition), recollection of relevant health history, ability to utilize and understand information in health care follow-up, and navigation of insurance issues, etc. However, 90 million adults have trouble understanding and acting on health information, per an Institute of Medicine (IOM) report on health literacy.1

What factors enable patients to navigate their journey and take more accountability for their health? What does the oncology care team need to consider? Arming a patient with tools for success goes well beyond providing brochures on their newly diagnosed disease and a list of Web sites for reference. Other factors come into play. Health literacy and patient health are intertwined and fundamental literacy is a strong predictor of health status. The IOM defines health literacy as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”1 Evidence shows that patients often misinterpret or do not understand much of the information provided by clinicians due to low health literacy.

KNOW WHAT PATIENTS KNOW

Does the patient have health information skills, including the ability to read, comprehend, and analyze the information provided? This does not equate to reading ability or the number of years of education, but rather a complex combination of reading, listening, analytical, and decision-making skills. It also requires the ability to synthesize these skills and apply them to health care situations. A well-educated patient who thrives in other areas (the workplace, for example) may not have an adequate literacy to thrive in a health care environment. In addition, many patients may be interfacing within the health care system for the first time.

The ability to carry out what may seem like simple tasks (ie, deciphering instructions on prescription drug bottles, calculating medication dosages, identifying and tracking symptoms, interpreting consent forms, and understanding medical education brochures) and important instructions requires strong health information skills. This skill sets includes six types of literacy.

  • Visual literacy Interpret graphs, symbols, charts, diagrams or visual data.
  • Numeric literacy Calculate or reason numerically
  • Scientific literacy Understand the basics on how science and medicine work
  • Computer literacy Utilize a computer to access and comprehend information
  • Information literacy Apply relevant information when making decisions
  • Cultural literacy Interpret and act on health information through the lens of dynamic characteristics shaped by collective beliefs, customs, and social identity. 
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