6. Critical Health Literacy and Evidence-Based Practice

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

Pink Ribbon Blues has shared numerous examples of the “alarmism, exaggeration, and oversimplification of health care issues” that pervade mass media and so-called awareness campaigns. It’s not easy to read between the lines of misinformation and trite “health promotion” campaigns that are posing as education. But, it is important. Critical health literacy is the cornerstone of being an informed consumer of health care.

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. The health advocate whose words open this essay 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.

I couldn’t agree more.

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness.”

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6 comments to 6. Critical Health Literacy and Evidence-Based Practice

  • I wonder about how these resources can be made available to newly diagnosed women so they can make more informed choices about treatment and surgery. Unfortunately, many of us are rushed into decision making. Though my medical team was generous with time to an extent, I was reminded several times in that first week that taking too long to commit to a plan could result in the cancer spreading. With that kind of pressure I found it nearly impossible to take the time I wanted to sort through the options, and these were only the options they presented. Now, nearly eighteen months after diagnosis, I’m learning there were other avenues to explore. The power of the white coat, the pressure to conform to norms, and the threat of death were too much for my usually overwhelming need to know all the angles before making any high-stakes decision.

  • This is such an important point. These are the resources that should be in every cancer library, in waiting rooms, in awareness campaigns, part of every cancer support hotline, and an integral part of the training for those in the cancer workforce.

  • I’d say quite a few of the charitable organizations who call themselves breast cancer advocates would do well to read this. Look at the evidence, evolve the message.

  • “Critical health literacy through evidence-based practice is crucial to improving health and medical decision-making. It’s also a fundamental right.” Those are powerful statements. Once again, it really boils down to truth telling. Isn’t that what evidence gathering is all about, finding the truth? Patients deserve nothing less.

  • This is exactly what many patient advocates and well trained patient navigators are trying to do.
    We need to keep in mind that not everyone has the educational level nor the ability, due to stress and a sense of urgency at the time of diagnosis, to suddenly get up to speed on their own in a matter of days. Making well informed decisions and having others without a vested interest in your choices to help you understand options and risks is key to the process. Fear is almost always a poor decision maker.

    There needs to be a balance in the diagnosis process. Medical professionals are faced with losing patients to follow up and patients often feel railroaded into quick decision making. People need to be informed that they have some time to ponder their choices, the process, and seek second opinions before making treatment decisions. The business model of medicine places pressure on physicians to book surgeries quickly. That needs to change.

  • Mary

    Education, such as the above, should be available long before a diagnosis is made. I think a good time would be when a woman is scheduled for her first mammogram. A head start could only be a good thing! After my diagnosis, I did not have time to get up to speed, especially, initially. After surgery, I did take the time to do my homework and, for me, the absolute benefits of adjuvant therapy were not sufficient for me to risk the toxic, often, long terms side effect. I choose quality of life and turned down $100,000 worth of treatments, including AC chemo, Herceptin and the aromatase inhibitors. The absolute benefits were not high enough. Too often benefits are given in relative numbers and we tend to think in absolutes. Thus we tend to think the benefits of a treatment are better than they are.

    Quote: “By any standard, we have not made adequate progress. Despite years of campaigns to raise awareness, ever expanding screening programs, increased fundraising efforts and research, breast cancer incidence and mortality have not changed significantly.” National Breast Cancer Coalition’s Sept. 2010 white paper.

    This white paper should be required reading for all diagnosed with breast cancer. It goes into many of the issues I have with treatments, their toxicity and lack of significant benefit.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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