How Patient Advocates Can Improve Health Literacy

October 6, 2014

Many clinicians, insurance company claims representatives, lobbyists, and directors of medical associations do not realize how many adults in the U.S. (90 million) are not conversant with navigating the health care system. Even if they are aware of the fact itself, the seriousness of the implications may escape them. Low levels of health education bogs down an already inefficient and overly complicated health care network. The U.S. health care system is complex and disjointed. Even highly-educated persons often find navigating the system difficult, from selecting a health care provider and health insurer, to understanding their treatment options, following a treatment protocol, parsing medical bills, and complying with medication instructions.

Patient advocates working in different areas of the health care system have multiple opportunities to facilitate increased medical literacy and control the damage caused by low literacy. There is a nearly overwhelming supply of high-quality information on the Internet available to the PA and to health care consumers appropriate to their ability. One of the most comprehensive sites is the Health & Human Services’ Agency for Healthcare Research and Quality(AHRQ) page  Consumer Information and Education. There is even at least one free online course to improve one’s ability to improve communication with low literacy consumers.

Health advocates use favorite tactics to combat low literacy rates, including being cognizant and familiar with the issue, cause and implications of compromised literacy and assessing each client’s literacy level (as well as family members, if applicable). When evaluating a particular patient’s literacy skills, the advocate may obtain a description of a typical day to get a sense of the rhythm and environment of her client. The client’s description may pinpoint difficulties with treatment compliance; highlight easy-to-implement solutions, and increase the chance that follow-up exams are kept. Providing tools to help the patient retain information during a doctor’s visit, such as educational websites (a great example is the National Patient Safety Foundation’s Ask Me 3 program) and/or audio-recording or video-recording via a mobile device, can be effective at increasing the patient’s understanding of his medical condition and treatment. The PA can be an intermediary in several directions, not only toward the patient, but for medical institutions. The Health Literacy Precautions Toolkit is geared toward clinicians* as is the CDC’s Gateway to Health Communication and Social Marketing Practice. Designing easy-to-read and easily navigable websites is helpful. Virtually all health care consumers use the Internet for help with medical information. Although this suggestion assumes that one with compromised literacy skills nevertheless has a fair degree of reading cognition, the degree of information they are able to use to help them communicate with their doctor varies. Another issue with Internet usage is that even sophisticated readers may not attend to the quality of the website or if the information is current.

Closely related to easily understandable websites is composing health care documents in plain language, including insurance policies, hospital bills, informed consent documents, and discharge instructions. Insistence upon institutions using plain language such as how it is is spoken makes the system more user-friendly. Despite the formidable barriers to improving accessibility to the health care system, the benefits are more than worthwhile and justify expending significant resources to achieve improved patient education.

Additionally, the advocate is in a uniquely influential position to contribute to health education, increase awareness of medical errors and influence change at a public policy level. PA’s are positioned to suggest and even implement changes with institutions vested in an efficient and effective health care system, including clinicians, insurance companies and their claims representatives, lobbyists, and directors of medical associations.

Skillful medical interpreters are an integral part of accessible health care for those whose English skills are limited. Guidelines on the effective use of medical interpreters are located at the Association of American Medical Colleges’ Guidelines for Using Medical Interpreters.

Exemplifying sensitivity to other cultures’ practices, which may be at odds with how medicine is conducted in the U.S. health care setting, is crucial. Cultural competency is one of a number of factors contributing to low literacy. An excellent resource for exploring this issue and implementing its suggestions into the PA’s practice is located at

Tact and diplomacy help obliterate the stigma of low literacy, and educating patients about how they share their problem with many others may also help remove shame.

Finding and recommending group support programs which support the participants within a comfortable social environment and simultaneously add to their literacy are useful resources.

The issue of Informed Consent is critical when communicating with patients with impaired literacy. The required practice of Informed Consent before performing a procedure lacks clarity not only with literacy challenged patients but also with highly-educated patients. Although the purpose is straightforward,that is, to inform the patient of the pros and cons of a medical procedure to be performed, the technical jargon, obfuscated writing style, and narrow scope of the Informed Consent is confusing and intimidating. Many patients sign the IC without understanding the specifics of their procedure and with time pressure placed upon them by the clinician or administrator. The Informed Consent document is critical to the practice of ethical medical practice, and this is another area where the advocate can be most helpful to his client. The PA can insist that the information be made intelligible to the patient, can obtain a medical interpreter if necessary, and probe the clinician’s knowledge and disclosure of aspects of the procedure which have not been volunteered but are critical for the patient to know. This dynamic may require sensitivity to other cultures (one should at least be conversant with African-American, Asian, and Hispanic populations, and have a working knowledge of the religious issues concerning illness and end-of-life issues for Catholicism, Seventh-Day Adventists, Islamic, Jewish, Asian (including Buddhist and Hindu) and Native Americans.


*Jo Anne L. Earp, Elizabeth A. French, and Melissa B. Gilkey, Patient Advocacy for Health Care Quality: Strategies for Achieving Patient-Centered Care (Sudbury, MA: Jones and Bartlett Publishers, 2008.



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3 Responses to How Patient Advocates Can Improve Health Literacy

  1. Kevin Knauss on September 11, 2011 at 3:00 am

    If I would spend as much time on learning about my medical conditions, treatment and options, as I do following the Giants, I would not be so clueless about certain medications the Dr. has me on or why. However, some folks truly need a PA to help slow down the blur of the medical office and decision making. PA’s can be so very important, I wish more people would volunteer to help out family and friends.

    • Claudia on September 13, 2011 at 5:57 am

      Kevin, it often is wise not to dwell overmuch on one’s medical condition – there is always that fine line between attention and obsession!

      That said, the rate of low literacy in this country is appallingly high. An advocate can do much to help the individual understand the baffling and complex U.S. health care system, but other parts of the system of course need to do their part.

      Thank you for your kind words.

  2. Marie Ennis-O'Connor (@JBBC) on September 11, 2011 at 7:05 pm

    As a practical example of how patient advocates can improve health literacy, I was involved with the design and publication of a patient information leaflet, 9 Things You Should Know About Breast Cancer. Information on breast cancer can be very complex and the sheer volume available can be very confusing and daunting for many women so the leaflet we designed distills crucial information into 9 illustrated points which are easy to read and remember, but accurate and vitally important.
    The leaflet is available to download at:

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