BCC Hot Topic: Critical Health Literacy

Critical Health Literacy: understanding medical situations to make reasoned assessments of medical options, including their benefits, risks, and limitations. It involves extracting information, comprehending its relevance, and analyzing it effectively so that it may be used for one’s own benefit and for the benefit of society.

Health literacy is more than being able to read and follow instructions on a prescription bottle. Understanding health and medical situations enough to make reasoned, empowered decisions requires access to, and a clear understanding of, evidence-based medicine (EBM).

EBM is a concept that was developed at McMaster University in the 1990s, and has been defined as “the integration of best research evidence with clinical expertise and patient values.” But to determine which evidence is trustworthy — and therefore ‘best’ — it must identified, selected, evaluated, synthesized, summarized, and updated systematically and continuously. At times, patients and health advocates take on this responsibility themselves. Health advocate Musa Mayer is one of them.

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 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 Booklet CovMusa Mayer’s insights into evidence-based practices and health communication comprise an important chapter in the Food and Drug Administration’s 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. 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.

Here is a glossary of terms that is useful for improving one’s health literacy. Keep it nearby when reading health news and evaluating scientific evidence.

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