Making the Case for Health Literacy

The key to a patient’s understanding of the complexities oftheir cancer care experience is patient–provider communi-cation. Healthcare providers and educators are recognizingthat quite often, there is a substantial disconnect in knowl-edge and understanding between what is communicated andwhat is actually understood by the patient. Having cancer iscomplicated; understanding all of the nuances of their care,starting with the diagnosis, followed by treatment and thenfollow-up care is a bit like learning a new language. Add tothis, the shock, fear, and other emotions experienced by apatient when hearing the word “cancer” makes it even moredifficult to comprehend complex information.For many years, educators have been focused on makingthe patient education experience a quality one. Initiativeshave focused on conducting a thorough needs assessment,taking into consideration the person’s baseline knowledge,learning preferences, culture, literacy level, and language.However, we may have been missing a key element to realunderstanding—health literacy.Healthliteracyisdefinedasthedegreetowhichindividualshave the capacity to obtain, process, and understand basichealth information and services needed to make appropriatehealth decisions [1]. Research shows that around 40 % of alladults lack the level of health literacy needed to manage theirown health. In addition, and directly relevant to cancer care,research reports that 66 % of people age 60 and older haveinadequate or marginal health literacy skills [2]. Limitedhealth literacy impacts a person’s ability to find and under-stand health information, manage chronic disease, and makeinformed decisions. For healthcare providers and educators,health literacy is a key factor when working with patients ofany age, culture, education, and socioeconomic status [3].In 2010, the US Department of Health and Human Serv-ices published the National Action Plan to Improve HealthLiteracy. One of the primary goals of this plan is to “Pro-mote changes in the health care system that improve healthinformation, communication, informed decision making,and access to health services [4].” This plan serves as a roadmap to work together to bridge the gap between patients andproviders and improve health literacy. Healthcare organiza-tions are making progress, but the road ahead continues tohave opportunities for improvement.With all of this in mind, the Cancer Patient EducationNetwork (CPEN) formed a taskforce in early 2011 to addressthe issue of health literacy within the practice of cancer edu-cation. CPEN also recognized that educators need to haveaccess to resources and tools to assist in addressing healthliteracy in their practice. Task force members from aroundthe globe joined forces to create a health literacy toolkitwith interventions and strategies that had been studied andproven to improve health literacy. The toolkit includesresources that address healthcare provider awareness andeducation, patient self-management and strategies for alter-native document design and delivery. The toolkit is postedonthe CPEN website http://www.cancerpatienteducation.org/health-literacy.shtml#Iand available for use for educators andhealthcare providers.One of the primary strategies that are making a positiveimpact on health literacy is the plain language initiative.Plain language is a global movement with a strong researchbase and backed by international leaders and organizations.In 2010, President Barack Obama also signed the PlainWriting Act of 2010 which requires the federal governmentagencies to write all public documents with elements ofplain language.Plain language is clear, concise, and easy to read. It isunderstood the first time you read it and in the shortest timepossible. The priority is the reader, and includes best prac-tices of proper grammar, organization, and word usage that