Health Literacy

Media alarmism, exaggeration, and oversimplification of health care issues is pervasive. Although often justified as educational, the marketing and advertising of drugs and other products to physicians and patients is carefully created to enhance perception of benefits and minimize perception of risk. Marketing works, as our massive consumption of these products clearly demonstrates…

All of this is compounded by an almost total lack of education in how to be an informed consumer of health care.

How do we know what we know in medicine? Where does the evidence come from, and how believable is it? Most people have no idea.”

Musa Mayer, author, advocate, and 22-year breast cancer survivor

It’s not easy to read between the lines of misinformation and trite “health promotion” messages posing as education. The “alarmism, exaggeration, and oversimplification of health care issues” in mass media and awareness campaigns s a major barrier to becoming an informed consumer of health care. How does one become health literate in such an environment?

Health literacy means more than being able to read and follow instructions on a prescription bottle or successfully make appointments, though this too is important. Extracting information, comprehending its relevance, and analyzing it effectively so that it may be used for your own benefit and for the benefit of society… well, that’s something quite different. That’s critical health literacy, and it is vital for understanding medical situations and making reasoned assessments of medical options, including their benefits, risks, and limitations. Unfortunately, even the most judicious person is not likely to benefit from critical health literacy unless the information she or he has is based on the best available evidence.

Evidence-based practice involves the ongoing systematic review of the “science,” systematically developed statements to assist practitioners and patients, the integration of the science with clinicians’ training and experience, and patients’ active participation in making decisions about their care.

Evidence-based approaches are designed to help people to make informed and empowered decisions about their health and medical care.

Improving health literacy through evidence-based practice is a monumental task especially when factoidsimpressions, and junk news flood the mediascape. Luckily, there are some important inroads being made. Health advocate Musa Mayer is a good example of someone who has facilitated empowered and evidence-based decision making within and beyond the world of breast cancer.

After she was diagnosed with Stage II breast cancer in 1989, mental health counselor Musa Mayer wrote a detailed account of her treatment and overall experience, “Examining Myself: One Woman’s Story of Breast Cancer Treatment and Recovery” (1994). After realizing first hand the importance of getting information that is not only based on the best science but is also practical and well-communicated, she wrote a resource book for metastatic breast cancer in 1998, “Advanced Breast Cancer: A Guide to Living with Metastatic Disease,” and then another book in 2003 that reviewed scientific literature and wrote about it in accessible ways, “After Breast Cancer: Answers to the Questions You’re Afraid to Ask.” Many of the excerpts are available for free on Mayer’s website at AdvancedBC.org. The website also includes additional up-to-date information about metastatic breast cancer and its treatment.

FDA Guidebook

Musa Mayer’s insights into evidence-based practices and health communication also comprise an important chapter in the Food and Drug Administration’s recent PDF book, ”Communicating Risks and Benefits: An Evidence-Based User’s Guide.”

The guidebook (provided here for free) provides an introduction to evidence-based communication, best practices, and best guesses.

Overall, the guide gets to heart of evidence-based practice: (1) What does the science say? (2) What are the practical implications of the scientific results? (3) How can one evaluate communications based on that science? The book answers these questions within a broad range of relevant topics from language (Musa Mayer) to health care professionals (Betsy Sleath and Michael Goldstein)to news coverage (Gary Schwitzer) to strategic planning (the editors). Each chapter draws upon notable research and provides additional resources.

Critical health literacy through evidence-based practice is crucial to improving health and medical decision-making. It’s also a fundamental right, as Musa Mayer concludes in her chapter in the FDA Guidebook. She writes,

  • We deserve accurate, quantified information about the known benefits of treatments we are considering.
  • We deserve to learn about both short- and long-term risks of treatments, in so far as they are known.
  • We deserve accurate, readily available, culturally sensitive, evidence-based patient informational materials on diseases and conditions, drugs and other forms of treatment, prepared by independent arbiters of information skilled in risk communication.
  • We deserve to be taught the fundamentals of how evidence is gathered in medicine as a matter of public education and public health, and how to evaluate its quality.
  • We deserve to know when we are being marketed and who stands to profit from the treatments we take.
  • We deserve research that asks and answers questions that matter, especially comparative effectiveness research to resolve important clinical uncertainties.
  • We deserve time with our health care professionals to help us make informed decisions so that the best available scientific evidence in consultation with patients and a medical team result in decisions that have the best possible outcomes as best suit the patient.

Unfortunately, we will not get what we deserve unless we demand it.


Related: How to Evaluate On-Line Health Information

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