When Health Care Is a Foreign Language: Improving How Patients Navigate the System

It shouldn’t shock you to hear that health literacy is a problem. According to Pfizer, around 90 million Americans struggle with health literacy, which is commonly defined as being able to use health information effectively to obtain appropriate care and make health decisions. Skills under the overarching category of health literacy include reading, numeracy, analytical skills, and decision-making skills. Together, these skills allow a person to use health information appropriately. Unfortunately, the Centers for Disease Control (CDC) estimate that 90% of American adults have difficulty effectively using everyday health information. As you might imagine, poor health literacy is associated with poor health outcomes (Berkman et al., 2004). There are at least four separate issues contributing to the inability of patients to effectively navigate health information:

• A lack of familiarity with the bureaucratic processes of health care
• A lack of familiarity with the biological processes of health
• Confusing terminology that is not personally relevant
• Badly written or presented information

Each of these issues will require major efforts to address or even adequately discuss. I have a lot to say about all four, but will start with the first one: Health care is super confusing for people to access and use. A recent article in Kaiser Health News made this clear, highlighting stories of patients who misunderstand the health care system and don’t receive the best quality care as a result. These issues affect even well-educated patients, such as Deb Emerson:

“I have an education and I am not understanding this,” said Emerson, 50. “ I wonder about people who don’t have an education — how baffling this must be for them.”

Gaps in understanding widen further among patients with low levels of education, poor English language skills, different culturally-based attitudes toward health care, or no prior experience having health insurance. Among the issues identified by Anna Gorman in the Kaiser Health News article are:

• Increased use of emergency rooms for routine care
• Increased rates of hospitalization
• Inability to decode documentation, including explanations of benefits and bills
• Misunderstanding of the typically inverse relationship between plan premiums and deductibles
• Lack of understanding of basic health insurance concepts, such as deductibles, which 42% of Americans surveyed could not explain, or prescription refills

The Affordable Care Act (ACA) is intended in part to make health care more transparent to consumers, but several high profile gaffes have shown the confusion inherent in a major system change. In fact, any transition of a complicated system is likely to create temporary confusion as people are forced to move from a routine that may have worked for them to new patterns. For people who have figured out a way to handle their medical needs, especially if their health literacy is tenuous, any change might disrupt their equilibrium. Additionally, difficulty with implementing the ACA, such as the disastrous launch of Healthcare.gov, can create both actual and perceived complications for patients.

What can we do about it?

I’m pessimistic that we can make health care easy to understand in the short term, but we can certainly make it easier to understand. By redesigning the ways we communicate with people about their health care, we can help increase comprehension. Here are a few examples:

• Do for health insurance what we’ve done for the nutrition label. Nutrition labels are notoriously confusing. Like many medical communications, they require both reading and numeracy skills. Design contests to re-imagine nutrition labels have yielded much more simple and comprehensible version. While the FDA’s proposed new food label is slightly less revolutionary, it too is an improvement from the old style and at a minimum reduces the need to calculate nutritional values for multiple servings.
• Make communications less wordy and more visual. And while you’re at it, make sure that your presentation prioritizes the most critical information. Thomas Goetz gave a wonderful TED talk on how the medical record can be dramatically redesigned to be more comprehensible for patients. The same principles he advocates here could be applied to health system documentation.
• Extend the care team. In 2010, the average time a patient spent with a doctor during a medical visit was 20 minutes. Physicians are over-extended, some spending as little as 12% of their work time on patient care (Block et al., 2013). Couple that with the fact that people of some cultural backgrounds have high trust for non-physician providers such as nurses, community-based health workers, or pharmacists, and it makes sense to leverage these other members of the care team where possible to guide patients. It may not even be necessary to use real people to extend the team. Dr. Timothy Bickmore of Northeastern University and his colleagues have found that patients who work with a computerized avatar prior to hospital discharge are better able to comply with aftercare instructions than patients who speak with a live provider–perhaps in part because they can take as much time as they need to repeat questions and absorb information.

Of course, simply redesigning how we communicate with patients won’t be enough to solve all health care access issues. However, especially when dealing with people whose health literacy is limited, adopting clear communication practices and making use of the extended care team for outreach are vital parts of an overall strategy to improve appropriate care usage.

In future posts, I plan to explore ways we might attack some of the other barriers to health literacy, including terminology and presentation issues. Please share any ideas or resources you have to help patients feel fluent in the language of health care!

References

Berkman, N. D., DeWalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., et al. (2004). Literacy and Health Outcomes (AHRQ Publication No. 04-E007-2). Rockville, MD: Agency for Healthcare Research and Quality.

Block, L., et al. (2013). In the wake of the 2003 and 2011 duty hours regulations, how do internal medicine interns spend their time? Journal of General Internal Medicine, 28(8), 1042-1047. Doi:10.1007/s11606-013-2376-6.