Empathy Begins Where Assumptions End: Building Trust without Bias
Jennifer Noonan, MSN, RN, Vice President, Clinical Strategy and Patient Engagement — I was recently reminded of how quickly we can let assumptions slip into our conversations, even with the best of intentions. I was catching up with a friend I met in the bleeding disorders community a few years ago. He is a bright, kind and resilient person that I’ve grown to admire deeply. As we were catching up, he mentioned his struggles with an ongoing hip problem. Despite my years in emergency medicine, my experience working alongside individuals and families in the bleeding and clotting disorder space, and the fact that I was standing in the middle of a bleeding disorders conference, I immediately slipped into a familiar place: assumption.
I assumed their pain was similar to my own knowledge of joint injuries, and I started offering suggestions without hesitation. I was wrong.
They had experienced a bleed into the joint, something far more dangerous and complex. That moment stopped me in my tracks. And honestly, it stayed with me long after our conversation ended. I couldn’t stop thinking about how quickly I had moved into assumption mode, about how my words might have landed, and about how often this probably happens in healthcare.
How often do we unintentionally minimize someone’s experience because it doesn’t look or sound the way we expect it to?
It was a sharp and humbling reminder that experience doesn’t make us immune to bias. It takes conscious effort to pause, listen, and to see the person in front of us for their unique reality, not the story we’ve constructed in our heads.
Understanding Bias in Health Literacy and Care
Implicit bias is an unconscious negative attitude toward a specific social group, and it isn’t always intentional. Often, it comes from a natural human tendency to rely on patterns and past experiences to make sense of the world around us. In healthcare, though, those unconscious shortcuts can have very real consequences.
I’ve seen it in clinical settings and in patient support programs:
- A provider assumes a patient understands a treatment plan simply because they nod along.
- A patient’s symptoms are minimized or dismissed because they don’t “appear sick”.
- Materials are written at a level that’s too complex, leaving patients feeling overwhelmed or left behind.
All of these moments can chip away at trust. And when trust erodes, communication breaks down, adherence falters, and health outcomes suffer especially for people navigating rare or chronic diseases.
Rare and Chronic Disease: The Perfect Storm
Bias and health literacy challenges collide in the rare and chronic disease communities in ways that can be devastating. These conditions are often difficult to diagnose and poorly understood outside of specialized circles. Lack of understanding can force individuals to become their own experts, carrying the weight of educating not only themselves, but also their care teams, schools, employers, and even insurers.
A 2024 scoping review highlighted that people with rare disorders often face significant gaps in knowledge, self-management, and understanding of their diagnosis, in part due to lack of access to tailored health information.
At Accessia Health, we’ve seen firsthand how the burden of navigating a system that isn’t built for these unique needs affects people. We hear stories every day from individuals who were dismissed in the ER because they “didn’t look sick,” or who delayed treatment because the language used to explain their options felt like another foreign language to decipher.
This cycle isolates patients, decreases confidence, and, in some cases, puts lives at risk.
But the stories we hear also show us something else: the resilience and determination of those in the rare and chronic disease communities. When we listen and truly understand the lived experiences of those we support, we uncover not just their challenges, but their solutions.
A Call for Change: Building Empathy and Equity
Changing this dynamic starts with something simple: slowing down and really listening. Whether you’re a provider, a health plan or any other stakeholder in someone’s healthcare journey, here are a few practical shifts that can make a meaningful difference:
- Listen first. Instead of rushing to respond or explain, pause to truly hear what someone is saying, and what they’re not.
- Invest in education and training. Bias training, communication workshops, and cultural competency programs aren’t “nice-to-haves”—they’re critical to delivering equitable, effective care.
- Simplify language. Use plain language and check for understanding without condescension.
- Value lived experience. Create space for people to share their expertise and perspectives.
When we approach conversations with curiosity and humility, we move closer to a healthcare system that doesn’t just treat conditions but one that partners with people in their care.
Implicit bias isn’t always malicious, but research shows it has real impact. A systematic review found that higher implicit bias among healthcare providers is associated with poorer patient-provider communication and lower patient trust.
That earlier conversation reminded me of something simple but essential: empathy begins where assumptions end. It doesn’t require a flawless response or encyclopedic knowledge. What matters is slowing down, listening without judgment, and meeting people exactly where they are. Since that moment, I’ve been more intentional about how I approach conversations, pausing, asking questions, and letting others define their own experiences before I draw from mine.
For those of us working to improve health literacy and access in rare and chronic disease communities, this is where real change begins. Every interaction is a chance to dismantle quiet biases and build trust. And when we do that, we create connections, foster understanding, and lay the foundation for better outcomes, not just for individuals, but for entire communities that have too often been unseen or unheard.