Paulette Compton’s husband had an MBA and was trained in the military to fly planes, helicopters and blimps. But faced with doctor’s recommendation to get a chest X-ray to determine the cause of a persistent cough, he refused.
She learned that only after Cecil Compton died at age 71 from lung cancer, five months after it was finally diagnosed.
Now Compton is left to wonder if her husband had understood that acting on the advice to get a chest X-ray could have led to early detection of cancer.
“There is no doubt my husband was a smart man, a very smart man,” Compton said, “but I don’t think he understood why a chest X-ray might have been important.”
According to experts, Cecil Compton fit the profile of most people who don’t understand health information. They are literate on many other topics but still find it difficult to understand and act in order to make the best choices.
Health literacy, or being able to read, understand and act on medical information, is a struggle for nine in 10 people, according to U.S. Preventative Task Force, an independent group of health care experts.
To Andrew Pleasant, a health literacy expert at Canyon Ranch Institute in Tucson, improving that statistic would improve public health and give people with chronic medical problems the tools to better manage their care.
“Information presented in a way that makes sense, and in a language that is understood, helps people develop healthy sustainable behaviors that over time leads to a lot less money spent on medical problems,” he said.
Too many people think that health literacy automatically comes from a website, said David Kaufman, an associate professor in Arizona State University’s Department of Biomedical Informatics who has researched how patients use the Internet.
“Even if people can find health information about a problem such as cancer, that doesn’t equate with actually understanding that information,” he said.
Evonda Copeland, library services supervisor for Scottsdale Healthcare, said that’s where a medical librarian can step in by taking the time to give personal assistance and one-on-one attention to make sure patients have answers to their health care questions.
Most hospitals have medical libraries as a resource for doctors and nurses, but some health care organizations also have medical libraries filled with information just for patients, like the Werner Resource Center at the Virginia Piper Cancer Center.
“When patients come into the library, sometimes they have just been given a cancer diagnosis and they are really, really scared,” Copeland said.
“They leave here not just with information but with an understanding that makes them a little less afraid,” she said.
Arizona State University’s College of Nursing and Health Innovation will offer a new program in 2015 designed to meet the public need for health literacy.
The Bachelor of Science in Patient Advocacy and Health Education will provide individuals with expertise in health literacy and other areas, according to Brenda Morris, associate dean for academic affairs.
“Nationally, there is a huge drive for a new type of community health worker, not necessarily a nurse, but someone who will serve as a really solid health educator,” Morris said.
Jutta Ulrich, who worked with Health Guide America, a nonprofit health literacy organization, said that people who still have questions after leaving a doctor’s office may not realize they have access to a broader network of resources.
“Pharmacists can often provide answers to medical questions, especially those related to medications or vaccinations. School nurses might have an answer. Maybe make a call to the foundations that raise awareness for problems like memory or diabetes. Or even go to the public library,” she said.
Ulrich said there’s much still to do to make sure health information is available for those who want it and for those who need it.
“Health literacy is still in its infancy, and I’m hooked on making it better,” she said.
Building health literacy:
• Take a trusted individual with you to medical appointments.
• Don’t be afraid to ask questions or write questions down before medical appointments.
• Don’t be afraid to ask for further explanations when provided with written medical information or when trying to understand information from the Internet.
• Remember advocacy groups, pharmacists, medical librarians and public libraries can be information sources.
Health literacy resources:
• American Medical Association
• U.S. National Library of Medicine
• American Board of Internal Medicine Foundation
• National Comprehensive Cancer Network Doctors, groups: Health literacy helping patients better understand care