Imagine you’ve just been diagnosed with a blood disorder called antiphospholipid syndrome. Your doctor ran through the details, but was out the door and into the next exam room before you had a chance to process everything, let alone ask many questions. So, you went home and logged onto the Internet in hopes of finding a comprehensive explanation of your condition. Here’s what you find on the American Heart Association’s website:
A phospholipid (fos”fo-LIP’id) is a fat (lipid) that contains phosphorous. It undergoes hydrolysis (hi-DROL’ih-sis), which means it splits into fatty acids, glycerin and a nitrogen compound when water is added. The antiphospholipid (an”tih-fos”fo-LIP’id) syndrome (APLS) is defined by antiphospholipid antibodies and blood clots forming in blood vessels, recurrent pregnancy loss, or a decrease in the number of blood platelets.
Confused? You’re not alone.
You’re among the vast majority of American adults who have some degree of difficulty obtaining, processing and fully understanding the health information you need to manage your health.
In the National Action Plan to Improve Health Literacy, released last Thursday, the U.S. Department of Health and Human Services called for the elimination of jargon-filled, complex explanations that people encounter in medical forms, on health websites and in public health recommendations.
“Health information is not easy to understand,” said Dr. Michael Wolf, director of Northwestern University’s Center for Communication in Healthcare and Health Literacy and Learning Program.
“We don’t oftentimes deliver it in a way that most people can comprehend,” he said.
Actually, health information is delivered in a way that 9 out of 10 American adults find difficult to understand, the Action Plan stated.
Chicago resident Thelma Brookins is one of them.
Not too long ago, Brookins, 66, was sitting in an exam room anxiously awaiting a diagnosis. Her doctor walked in and started talking. She only heard a couple of things: “hematologist” and “oncologist.” A sense of anxiety washed over her and everything else the doctor said faded into the background.
“I heard hematologist and oncologist and it scared me to death. I’m thinking ‘Oh, my god, now I’ve got cancer.’”
Brookins spent more than six months living with what she feared was cancer. But the truth was that she didn’t really know, and didn’t feel totally comfortable admitting it.
“I was scared. Nobody explained to me that it was not cancer. All I knew is it wasn’t leukemia, but what it was I didn’t know,” she said.
Brookins’ situation is not uncommon, said Susan Levy of UIC’s Institute for Health Research and Policy.
A lot of people lack the confidence or ability to even ask the doctor questions, she said. “They will accept whatever the doctor is saying without asking further questions if they don’t understand.”
After several months and trips to the doctor’s office, Brookins finally learned she had a manageable blood disorder and that it was called antiphospholipid syndrome.
But it wasn’t until she signed up for a technology class offered through the Westside Health Authority called Consumer Health on the Web that she began to truly understand the malady.
With funding from the AARP, the class equips Austin community members with the technology access and skills to find “clear, quality, reputable health information,” said Cody McSellers-McCray, director of health promotions at the Westside Health Authority.
Access to health information is especially important for Chicago communities such as Austin, where many lack health insurance and most people don’t have a computer in their homes, McSellers-McCray said.
Ultimately, Brookins credits her instructor, McSellers-McCray, with doing more to help her understand her condition than four trips to the doctor’s office did.
“I told her about the blood problem I was having and she told me where to go look online to find out what blood disease it was,” Brookins said.
“It’s been a big help because every time I want to know something about my condition, I can go to the Internet,” she said. “I can’t go to the doctor every time I have a question about something.”
Nor can most others.
The CDC reports the average American spends only one hour a year in a doctor’s office or a hospital.
“Unfortunately, doctors don’t have as much time as they used to with a patient to even take the time to explore whether someone understands something and then to take the time to explain it,” said Dr. Susan Erlenborn, who works as a medical consultant for the Westside Health Authority.
That’s one reason many public health officials are placing more faith in health education programs such as the Westside Health Authority’s than doctor’s offices.
“Today, leaders in the fields of public health and adult education are shifting the focus from the hospital to the community to improve how people understand and use health information in their daily lives,” according to a recent CDC report.
But it’s not just a lack of time that makes it hard for health care providers to communicate clearly and effectively with their patients. It’s also a lack of training and tools to measure health literacy.
“Those of us who go through training and medical school really study physiology and biology,” Erlenborn said.
“It’s when you get out in the real world and things that are supposed to work aren’t working that you have to figure out why, like why patients aren’t taking their medication properly,” she said.
Often, patients fail to take their medication properly and wind up putting themselves in danger because they lack health literacy, Wolf said.
But assessing a patient’s level of health literacy is no small feat for physicians. Unlike physiological problems, there aren’t any telltale signs of low health literacy, Elizabeth Hahn explained.
“Anybody can have low health literacy because the terminology and the context is different from what you might encounter in your day-to-day life. So you might have someone who is highly literate in all other respects, but then they enter a health care setting and have all of these terms they’ve never seen before,” she said.
Hahn is a medical sociologist and biostatistician at Northwestern University’s Institute for Healthcare Studies, and is one of many Chicago-area researchers leading the nation on the health literacy front.
With support from the National Institutes of Health, she is working to develop the first health literacy test that patients can self-administer.
The tool is intended to eliminate the shame patients may feel when undergoing doctor-administered health literacy tests. It’s also designed to help doctors determine their patients’ specific level of health literacy in real time.
Here’s how Hahn envisions it working: A kiosk with a talking touch screen would be stationed in doctor’s offices, she said. After checking in, patients would sit down at the kiosk for a quick computer adaptive test, designed to assess their level of health literacy.
Results would then be transferred to a patient’s electronic medical record and doctors could read them before conducting an examination, she continued.
While Hahn is developing a standardized measure of health literacy for doctors, Wolf and his colleagues are developing a standardized set of medication instructions for patients.
The instructions are clearer and more consumer-friendly than existing medication instructions, said Wolf’s colleague and Health Literacy and Learning program director, Stacy Cooper Bailey.
For example, many of today’s medication labels instruct people to take two pills twice daily, but that is often misinterpreted to mean take two pills altogether, or take four pills within a two-hour time period, Bailey said.
A test revealed that more specific instructions like, “take two pills in the morning and two pills at bed time,” are easier for people to comprehend, she continued.
The standardized, simplified medication instructions Wolf and his team developed are now being tested in pharmacies near Washington, D.C., and translated into five languages: Spanish, Korean, Chinese, Russian and Vietnamese, Bailey said.
The goal is for the instructions to be vetted and translated by January 1.
In the meantime, Chicago’s Westside Health Authority plans to expand its consumer health on the Web program to empower more people like Brookins with the health information they need to successfully manage their health, McSellers-McCray said.
“We want to offer [the class] more often because we’ve seen the impact,” she said.
The Westside Health Authority also hopes to help equip Austin community centers, libraries and park district facilities with the technology and training they need to play a role in improving the health literacy of Austin residents.
On the national front, the U.S. Department of Health and Human Services will issue its Healthy People 2020 report late this fall, outlining the nation’s health goals for the next decade.
And “improving health literacy is critical to achieving the objectives set forth in Healthy People 2020,” said Howard Koh, assistant secretary for health for the U.S. Department of Health and Human Services.
“There’s a lot of movement on this right now,” Wolf said. “And health literacy is going to be even more prominently displayed in 2020, especially as more and more studies are recognizing how health literacy is a matter of health care equity.”
What you can do to improve your level of health literacy
Navigating through the vast amount of health information on the Web is no easy task. A Google search can often yield confusing and conflicting information. Physicians, medical librarians and public health officials recommend that people turn to these sites for clear and credible health information:
• The U.S. National Library of Medicine: nlm.hih.gov/medlineplus
• The Centers for Disease Control and Prevention:cdc.gov
• The National Institutes of Health: nih.gov
Also, the National Patient Safety Foundation encourages patients to always ask their health care providers three questions.
1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?
To learn more, visit npsf.org/askme3.
The National Action Plan to Improve Health Literacy
The U.S. Department of Health and Human Services released its National Action Plan to Improve Health Literacy on Thursday. The plan outlines seven goals for improving the nation’s health literacy and comes at a critical time, when many people will be entering the health system for the first time.
“Health literacy is needed to make health reform a reality,” said HHS Secretary Kathleen Sebelius. “Without health information that makes sense to them, people can’t access cost effective, safe and high quality health services.”
Seven goals for improving health literacy
1. Develop and disseminate health and safety information that is accurate, accessible and actionable.
2. Promote changes in the health care system that improve health information, communication, informed decision making and access to health services.
3. Incorporate accurate, standards-based health and science curricula in child care and education through the university level.
4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community.
5. Build partnerships, develop guidance and change policies.
6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy.
7. Increase the dissemination and use of evidence-based health literacy practices and interventions.
The action plan also outlines specific strategies for different sectors of the health system to implement each goal. A complete copy of the action plan can be found at: health.gov/communication/HLActionPlan.