October 17, 2014 — Blog Post
Fragmentation, Complexity, and the Consequences of Low Healthy Literacy
By now it is well known that problems with low health literacy are widespread. When we talk about health literacy, we are not just talking about people’s ability to read words on a page, but rather about their ability to successfully navigate and manage all of the interactions, documents, interfaces, media and information that they encounter as they try to stay well or seek treatment for health problems. Even for well-educated people who have lots of resources (i.e., time and money), the increasing complexity and fragmentation of the healthcare system make it difficult to make good decisions about their health.
Very little in everyday life prepares us to be able to make the kinds of inferences and decisions which we are routinely asked to make in healthcare. Unlike other areas of our lives, where we might be able to rely on common sense to guide us through uncertainty or to help us make sound judgments even with incomplete or ambiguous information, the specialized and rapidly changing content of healthcare information often requires us to master new concepts and vocabulary, and to do things that common sense is naturally quite bad at, like reason about probabilities, or discern the difference between a vaginal and a rectal suppository.
The consequences of low health literacy, especially in the context of so much fragmentation and complexity, should be a concern to us all. When we can’t understand or navigate the information and interactions we encounter in healthcare systems, we don’t understand how to prevent common illnesses. Even after getting diagnosed, we don’t know what’s wrong with us. We don’t understand how to use the increasingly complex drugs and devices that health professionals ask us to use. And if we are lucky enough to understand how to use a drug or a device, we often don’t know how it works, what its comparative risks and benefits are, or what to expect in terms of its side effects or effectiveness.
One of the most significant movements in healthcare today is the movement to make care more patient centered. By this, people generally mean that care should be tailored to the needs, beliefs and preferences of individual patients. But complexity, fragmentation, and low health literacy severely undermine efforts to make care more patient centered. When patients don’t understand their diagnosis, their prognosis or their treatment plan, when they don’t understand the balance between risks and benefits, and when they don’t know how to use diagnostic devices, patient portals and other new technologies, care is, by definition, not patient centered. Remember, to be patient centered means to tailor care to a patient’s needs, beliefs and preferences. Clearly the most fundamental need, after providing emergent or life-saving care, is for patients to understand what’s happening to them and what they need to do to maximize the benefits and minimize the risks of care.
All of the things we care about in healthcare: quality, safety, population health, and cost, depend on being able to design interactions, documents, interfaces, messages and media that people can actually make use of in their daily lives, when they go back home and take care of themselves or their loved ones.
Thus, all of us involved in creating artifacts that patients interact with must redouble our efforts, using the best available techniques to design and redesign, measure and continuously improve the artifacts we create. We must use the best evidence to guide our designs. We must do user testing. We must develop evidence-based, normative (ideal) models of the domains we are working in. We are fortunate that a great deal is already known about how to design systems that are easier to understand and navigate. We must learn from one another, from the most gifted designers, and from the evidence. We might think that in committing to design with low health literacy in mind, we are simply making the artifacts we create easier to understand. If we are successful, we will be doing that. But we will also be addressing the most fundamental issues in healthcare: quality, safety, disparities, population health and cost.