Six patients visit a doctor’s office in the city and are handed a clipboard with seven International Prostate Symptoms Score (IPSS) questions – a fairly routine questionnaire. Only one of those six patients understands all seven questions. Only 38% of the six patients understand more than half of the seven questions. This is a troubling example of the challenges doctors face with basic literacy and the ability to understand concepts, like a scale of 1 to 10 for symptom intensity that most of us take for granted. And while this is an example of a single inner city case study, there are others indicating that nine out of ten adults do not understand the basic health information that is available in medical practices, community outreach materials, and retail stores.
Where is the health literacy disconnect?
General literacy issues aside, the lack of health literacy is not related to a lack of resources. There is certainly no lack of government organizations and consultancies who want to help others offer literacy programs. There are even those noble groups out in the community itself, striving to improve patient literacy one person at a time. In all of this good intent lies the problem. As a whole, we have a system that does a great job to support the delivery of health literacy to a community that mostly doesn’t realize it needs help.
But let’s take the discussion a step further. If nine out of ten of us can’t understand the information our doctors provide us, doesn’t that speak more to how the information is presented? Nine out of ten people, who understand banking, owning a business, technology, and law, can’t understand what is being asked of us as patients and why we are being treated with a certain protocol. Statistically speaking, you don’t understand your lab results, medication regime, or why your care plan is your care plan.
Your clinical data has traditionally been meticulously recorded and stored to make the clinician’s job easier. In this light, it is understandable why many health care professionals wonder why they should provide data to patients at all. The doctors didn’t record it for your consumption – that’s not how they were trained to think about clinical information. Doctors are recording information to be understood and used by other doctors. Doctors have actually told patients, “What’s the point of giving information to you? You won’t understand it anyway!”
Make my health data understandable!
Saying we won’t understand anyway misses the point – we want to understand our health data because we, more than anyone, want to get better. Physicians and their staff talk dreamily of a more compliant, engaged, proactive patient. How is that possible without the patient understanding their care? There are too many good reasons for investing in ways to make health information more consumable by patients. Chief among them is trust between care delivery and patient.
Doctors are the front line for health literacy.
Health literacy can only be effective at the point of care; no two patients are the same. Just as in care delivery, a color-by-numbers approach to health literacy will not work. A doctor telling a patient that they wouldn’t understand anyway is an admission of failure to engage the patient in their own care.
Doctors are already responsible for patient engagement and communication. Many are already investing in technologies and processes designed to make engagement easier. Clinicians need to work with technology companies to ensure the information is consumable by both patients and other clinicians. Introducing ways to make patient care summaries and exit discussions understandable to patients is a great first step.