Building Empathy is Tough—and Necessary for Equitable Improvement

Working in HIV care strongly informed my commitment to inclusion and equity in improvement spaces. Between 2013-2018, I had the opportunity to lead an improvement network across multiple countries in the Caribbean. Stigma and discrimination are significant barriers to accessing care for people living with HIV, and I designed the project to both build capacity and structures for quality improvement and decrease the stigma and discrimination faced by the most vulnerable patients. You can read much more about this project in my blog on the foundations of coproduction.   

I was not fully prepared for the work that was required to create a safe and brave space for people to come together, share their truths, and work together to transform the health care system. Our early efforts at patient partnerships were rich, but we needed to do more to center and respect their voices.  

We put a great deal of thought into our effort. We aimed to have those working in the healthcare system empathize with the experiences of patients. What I hadn’t anticipated was that empathy in this community would become a two-way street. Working alongside providers, patients also empathized with providers’ experiences working in a system with frequent medication and supply stock outs and high caseloads.  

We built this empathetic community in a number of different ways. One tool we used with a lot of impact was a set of “Walk a Mile” cards that described the frustrations and daily challenges each member of the improvement team faced. Patients got to see what providers regularly face, and providers got a look into the barriers the people in their care run into when accessing care.  

We fostered connection and empathy within our team through more exercises like ignite talks, or short talks where one person shares their experiences with a larger group; building a perspective prism, a tool that highlights how many people may experience and interpret one event or occurrence differently; and shadowing a patient or provider to see what it feels like to experience their world for a day.  

Building empathy is a lot of work, but we cannot do effective improvement for equity without it. Some of the benefits improvers see when empathy is fostered in an improvement team are that people negatively impacted by the system have opportunities to lead, and traditionally excluded voices are included when making critical decisions. Ideas solicited from patients, students, and others impacted by social service systems are also more often tested and implemented.  

Language and how the team members think and talk about themselves change, too—words like “you” often become “we.” Members stop pointing fingers at who they perceive to be the “cause” of a challenge and instead work together to create solutions to the systems-level failures that affect everyone. 

Finally, teams see that empathy becomes both cognitive—meaning that people understand the experiences of others—and affective—people feel what others experience. These two together are often necessary to build a key driver of success in improvement initiatives: people who then act on their empathetic understanding and feelings to make equitable changes.