This post was co-authored with Liz Boehm, Director, Patient Experience Collaborative at ExperiaHealth.

When we look at today’s healthcare environment, it’s very clear that we have a problem – rising costs and pressure to keep them contained, the increasing prevalence of long-term chronic diseases, and a healthcare workforce that is struggling to stay connected to its mission of helping patients heal in an environment of compassion and empathy. It’s also clear that patient engagement is a big part of the solution. We need patients to be active participants in their care plans to avoid unnecessary readmissions, to keep the potential damage from chronic conditions contained, and to help make choices that fit their financial, physical, and emotional goals.

But that’s where the clarity ends. What does “patient engagement” mean, really? And why is it so elusive? The truth is that changing patient behavior, and even simple communication is more complicated than we would like it to be. To create engagement we have to understand the circumstances that create “disengagement,” which may stem from fear, denial, apathy, ignorance, or even a patient’s very different view of what a positive or reasonable outcome might be. And then, based on that understanding, we need to construct solutions that are both personalized and flexible.

Let’s look, for example, at a story shared at the first learning session for the California Health Care Safety Net Institute’s Patient Experience Transformation (PExT) Initiative. A patient was being treated for hypertension, uncontrolled diabetes, kidney disease, and a host of other chronic conditions requiring strict adherence to medications to manage. His doctor, Dr. Jagruti Shukla* at San Mateo Medical Center’s Innovative Care Clinic, treated him for years and had little luck getting him to take control of his health. One day, this patient happened to get the last appointment of the day, and Dr. Shukla took a moment to get to know him and asked him about his background. The man told her about how he fled Lebanon after one day when bombs started falling all around him, killing his four companions. The man went home only to find that bombs had also destroyed his house, killing his wife and children. The man said, “We don’t decide when we die. God decides.” This was an epiphany for Dr. Shukla. She realized, “Why would someone swallow 20 pills every day that can upset your stomach or cause side effects when you thought you could die at any moment?” From that moment forward, Dr. Shukla changed her entire approach. She introduced her patient to all of the members of the care team, and switched the focus on medication adherence from preventing death to improving quality of life, one day and one symptom at a time.

Understanding patient beliefs and perceptions – including how they are shaped and influenced – is a critical starting point for driving patient engagement. That starts with being sensitive and compassionate about the fact that change is difficult – and failure is likely. So, our first steps to patient engagement must be to listen to what patients are really telling us, and creating an environment in which they are treated with dignity, respect, and compassion, above all.

M. Bridget Duffy, MD
Chief Executive Officer
ExperiaHealth

*Dr. Jagruti Shukla has since moved and is not currently working at San Mateo Medical Center.