Cancer: A Barometer for Health Literacy

“There exists a chasm of knowledge between what health professionals know and what consumers and patients understand. Basic health literacy is fundamental to the success of each interaction between healthcare professionals and patients—every prescription, every treatment, and every recovery,” said Howard K. Koh, MD, MPH, assistant secretary for health of the US Department of Health and Human Services (HHS), describing the current situation in health literacy.

In May 2010, the HHS rolled out the National Action Plan to Improve Health Literacy. The plan will affect a range of healthcare organizations and other parties across the United States: payers, providers, researchers, employers, nonprofits, and so on. The plan’s overarching goal is to create a society that is more informed and empowered and more engaged in its healthcare.

As a health educator, I speak often with cancer patients about their treatment experiences and their emotional and educational needs. Feeling uninformed about one’s treatment experience is a common theme. Patients will say that yes, they were given information about side effects—information most often provided orally by healthcare professionals. However, they:

• Have little recall of the details
• Have no idea what to look for or how to distinguish the feeling or symptom from other changes
• Don’t know how to care for themselves

This situation could be improved with access to communications that employ health literacy principles. I recently attended Moffitt Cancer Center’s annual conference, whose theme this year was “Cancer, Culture, and Literacy.” A panel of cancer survivors talked about their journeys with cancer and offered examples of what they had figured out through years of experience, what they hadn’t understood or known about cancer, and how cancer had affected them.

A breast cancer survivor described a visit, sometime after surgery, with extended family. She’d stood for many hours at the stove, making her family’s favorite meals. She hadn’t recalled hearing about her risk for lymphedema after lymph node removal, although she was certain her oncologist had mentioned it. After spending that day stirring and chopping, she developed terrible pain and was hospitalized for lymphedema. Would communications that took health literacy into account have better prepared her and helped prevent this outcome?

The reality is that health literacy affects every one of us: we are all consumers of healthcare, and we are all patients at some point in our lives. I hope Dr. Koh’s remarks serve as a rallying cry for pharmaceutical marketers to look for more ways to achieve better health outcomes, and that will mean going beyond providing a pill and instructions for use. Pharma marketers play a significant role in healthcare—from leading clinical trials to disseminating information about patient treatments. In order to "bridge the chasm" that Koh cited will require more, like providing clear, comprehensive and understandable health treatment solutions that account for patient needs, questions and expectations throughout the treatment experience.

A wealth of data shows an association between negative outcomes and low health literacy. Complex, chronic diseases such as cancer place an especially high premium on a patient’s health literacy. An individual with cancer embarks on a journey that requires him or her to cope with the initial shock and emotions that often come with this diagnosis, particularly with a metastatic diagnosis. At the same time, he or she has to climb a mountain of information that does not employ health literacy principles. The patient and his or her immediate caregivers are faced with learning the language of cancer while reviewing, understanding, and weighing the treatment options from a variety of sources—oncologist, nurse, family and friends, patient brochures, and the Internet—and then apply it to his or her individual circumstances. And that’s only the beginning of the journey. The experience of cancer should serve as a barometer for the impact of the National Action Plan to Improve Health Literacy.

Julia A. Olff, MBA, CHES
Director, Health Education
Encore, a HealthEd company

Comments

[Dr. Julia Overstreet]

Although I am a physician, I am not a cancer specialist. And I can tell you that the story above was just as true for me. I am both a breast cancer survivor and an ovarian cancer survivor. When you're the patient, it doesn't matter how educated you are ... your brain shifts into another gear altogether. Now you are THE PATIENT. You may know the meaning of the words they are saying, but your brain only hears part of it. The comments in the article above are so true.

[twitter.com/MelissaKDavies]

You raise a very important point about the value of health literacy. Through years of social media analysis, I have seen time and again that patients too often just don't digest the information they are given by physicians in those key office visits. As a result, their expectations are not properly set. Without an understanding of known side effects, the result can be that patients don't take the medication as directed or discontinue altogether. As you point out, health literacy is key to bridging this gap.

[Julia A. Olff, MBA, CHES, Director, Health Education Encore, a HealthEd company]

There are so many examples of information overload and decision-making challenges cancer patients face. I’ve just begun reading “The Patient from Hell: HOW I WORKED WITH MY DOCTORS TO GET THE BEST OF MODERN MEDICINE AND HOW YOU CAN TOO”, by Stephen H. Schneider, Ph.D. who recently passed away from mantle cell lymphoma. Dr. Schneider was a professor of biological science at Stanford University, a MacArthur Prize Fellowship winner, and an expert in climate change. Similar to how Dr. Overstreet described her experience, Dr. Schneider had scientific training and knowledge interpreting outcomes data, however he was still “scared to death” at first. Because of his analytical training, he was able to apply that expertise to ask challenging questions of his medical team, and request what he felt were beneficial changes in his treatment. Dr. Schneider advocated learning everything one can about one’s disease and then partnering with your doctor to choose the treatment they believe can offer the greatest chance of success. But for the average person, being able to advocate for himself is contingent upon his ability to become well informed about his disease and treatment options. So much of what patients hear and read is too complex for them to make use of; this is the gap we need to address.