Why patients need personalized education – and how we can build it
Seven years ago, while gearing up for another holiday spent away from my family, I was also mentally preparing for a second surgery at the VA hospital on base. Though I didn’t know it at the time, I was only five months into what would be an eighteen-month recovery effort (an experience that now serves as my why, detailed here). But beyond the pain and uncertainty that came to define my recovery, many years spent contemplating those days since have led me to a vital realization. Part of why I felt so helpless was because I knew very little about what was happening to me from a health standpoint, and that lack of knowledge made it impossible to grasp any context, let alone hope. That missing piece was knowledge; without it, I remained powerless.
The literacy divide
What I did not know then as a patient but have since learned through our work at IKONA is the stark difference between literacy and health literacy. There is a critical distinction between a person’s ability to read or write and their ability to use and understand information related to their health, referred to as health literacy. A clear example of this divide can be seen in education levels, which have proven to be unrealiable indicators of health literacy. In my case, even a college graduate with extensive technical and military training can still feel lost when faced with poor health circumstances — and it turned out I was far from alone in that feeling.
Nearly 36 percent of adults in the U.S. have low health literacy, with disproportionate rates found among lower-income Americans.
Through all its impacts — medical errors, increased illness and disability, loss of wages, and compromised public health — low health literacy is estimated to cost the U.S. economy up to $236 billion every year.
We all experience the consequences of our own health literacy levels. Every day we encounter choices that affect our health, from what we eat and drink to reading labels and deciding whether to see a doctor. And even when we do decide to visit our local health clinic, the ways we talk about our symptoms with health professionals can be a bit of a challenge. For the 133 million Americans with a chronic illness today, these behaviors and decisions can have significant implications for their overall health. That said, tremendous hope exists thanks to ongoing efforts to teach people how to effectively manage their health. Initiatives such as Chronic Disease Self-Management Programs (CDSMP) are reshaping the ways people feel, think, and navigate their daily lives. By designing programs that target holistic outcomes, from mental well-being and confidence to knowledge and motivation, we will begin to see the changes we have long-desired. But before we can talk about modifying behaviors at scale, we need to talk about education designed for the individual.
What people really need
It should not come as a surprise that most people experience increased levels of stress when faced with health challenges. The weight of this personal experience emanates from the patient out to their support network, including friends, family and loved ones. Unfortunately, from a neuroscience standpoint, stress inhibits our ability to learn. Bear with me, there’s more. Our brains are also hardwired to forget things we’ve learned, so even if we initially understand everything we are being told by a doctor, the chances we retain that information when we need it (i.e. the following day, week, month, etc) are quite low.
When it comes educating patients, we must overcome two inherent barriers: health literacy and neurobiology. Fortunately, decades of research in both areas have led us to an approach that addresses the Achilles heels of patient education: delivery.
Lets talk about what patients really need. First, patients need the right health information or clinical expertise (this is what they need to know). Second, patients need that information at the right time, whether it’s during a visit or when they start to forget the what in the days after a visit (this is when they need it). Third, how a person learns matters, depending on the information or behaviors they need to learn (detailed here). Finally, health education is emotional, so the why matters as well — hearing from others in your shoes can help you see your future self in a decision path or outcome. Getting delivery right is about more than telling a patient what she needs to know in the moment; it’s what she needs to know, how and when she needs it, and the reason why it matters to her.
What does this look like? How is it built?
These questions drive us forward and continually unlock unique insights into the ways people learn. But most importantly, these are the very same questions that allow us to understand and improve a patient’s learning experience. Let’s take each of these key points in line, using our kidney education platform as a guide.
What people need to know is the part we are all familiar with. In fact, there are plenty of clinical experts and resources readily available out there today. Once a health professional determines what a patient needs to know, it’s a matter of providing the handouts or pointing the patient towards the appropriate resources. In our case, we offer a simple user interface with courses designed to engage patients in 5 to 10 minute lessons.
When and how people learn is critical, so ensuring that they receive their lessons at the right time and in the right format is key. Too often we see patients handed brochures or sitting through hour-long lectures and webinars, but struggling to recall more than a few points when asked. Depending on what they need to know, you can determine the best method for delivering that information.
On our platform, users are notified when it’s time to continue learning. You can imagine how powerful it would be to predict when someone might be losing some of their initial comprehension, so that we might help reinforce those lessons learned, maximize their retention, and improve their confidence.
Why people learn is personal. In order to engage the emotional aspects of learning, especially in health care, it’s important to understand the power of storytelling. How often do we see and hear success stories from patient advocates, peer-to-peer support groups and community-based initiatives. It is far easier to imagine your self in a story than in a diagram or printed handout, and even better when that story is delivered by another human being who has been in your shoes. The reason we deploy tools like patient stories and virtual reality (VR) as parts of our platform is due to their inherent abilities to connect people. What better way to truly understand a path not taken, and perhaps to turn an available treatment option into a path not yet taken?
Get delivery right
We have a long way to go before patients can navigate their health care with complete confidence and understanding every step of the way. There are inherent barriers that continually get in the way, from health literacy to the way our brains are wired. The good news is that we can do something today to help address these challenges and get ahead of the uncertainty and powerlessness that result from inadequate education.
Whether your goal is to help people form healthier behaviors, feel less stressed, or adhere to their care plans, your journey begins with two fundamental challenges.
What steps will you take to create a plan and approach that works for your patients? How will your team leverage that knowledge to build personalized education plans that inform your treatment plan? How might you use personalized learning outcomes to improve shared decision making?
If you can answer these questions, patients like me will be forever grateful, confident, and more prepared for whatever comes next. I, for one, cannot wait to see what you build. If you’d like our help, we’d love to hear from you.
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For more on our 3-Step Framework for optimizing kidney education, download our .pdf guide here.
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About IKONA Health:
IKONA offers a smarter way for kidney care providers to deliver effective and measurable learning experiences to their patients and staff. Our platform uses learning science, storytelling and technology to address education and training challenges, dramatically improve patient understanding and ensure smarter, confident treatment decisions, starting with kidney disease.
