you have questions - patients have answers.
Empathy. Outside of ‘patient-centricity,’ it's one of the biggest buzzwords within the healthcare industry. The truth is, many people “do empathy” wrong. So today, in the final post of this five-part series, we are going to examine what empathy is, what it isn’t, and why this matters if we want to improve the patient experience.
I have spent the last four blog posts talking about the need for diverse patient perspectives, the first examining my own bias, the second examining biases in the industry, the third elucidating the harm in saying “we are all patients,” and the fourth highlighting why we need allies in patient advocacy.
Many such allies commented that they and others say “we are all patients” in order to create a sense of empathy that we will all be patients someday. But...that’s not empathy. The good news is that you can have empathy regardless of identifying as a patient, and in many cases you may be better off.
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Many people are aware that sympathy and empathy differ (and if you're not, Brené Brown provides a great explainer), but from what I can tell, lots of folks don't really get what empathy is. Empathy is the ability to imagine what another person might be feeling. The emphasis is on connecting to the emotion. It actually has nothing to do with you having similar experiences.
Justin Bariso, author of EQ Applied: The Real-World Guide to Emotional Intelligence, notes that "To feel and display empathy, it's not necessary to share the same experiences and circumstances as others. Rather, empathy is an attempt to better understand the other person by getting to know their perspective."
Read that again: “To feel and display empathy, it's not necessary to share the same experiences and circumstances as others.” This is why it isn't necessary for you to identify as a patient in order to practice empathy towards patients.
Dr. Hendrie Weisinger, author of Emotional Intelligence at Work, provides a great analogy that also exemplifies the pitfalls of trying to “put yourself in their shoes.”
"If a person says, ‘I screwed up a presentation,' I don't think of a time I screwed up a presentation—which I have [done] and thought, no big deal. Rather, I think of a time I did feel I screwed up, maybe on a test or something else important to me. It is the feeling of when you failed that you want to recall, not the event."
So what is the patient experience equivalent? Let’s take a look. If you wanted to imagine what it is like for a chronic pain patient to get the proper treatment, conjuring up a memory of the time you went to the doctor to get treatment for strep throat will not be terribly helpful. That memory will do nothing to help you feel what it's like to be accused of being a pill-seeking addict, or having your condition not taken seriously because some providers believe Black people don’t experience pain the same way as white people.
To practice empathy in this example, you would do better drawing upon a time you were falsely accused of doing something at work, or an instance where you weren't believed by a parent or spouse. Empathy is putting yourself in the feeling, not the experience.
Bariso says, “When a person tells you about a personal struggle, listen carefully. Resist the urge to judge the person or situation, to interrupt and share your personal experience, or to propose a solution. Instead, focus on understanding the how and why: how the person feels, and why they feel that way.”
As someone who has lived with juvenile arthritis my entire life, I have experienced the downside that comes with “putting yourself in the other’s shoes.” There is a huge lack of awareness that children can have arthritis, and as a kid that was really tough. When I actually had the courage to tell people I had arthritis or that a joint was hurting me, it was often met with, “I know what you mean, I [...sprained my ankle, tore my ACL, stubbed my toe, etc]." Rather than being met with curiosity and a desire to learn more, people responded with what I used to call "one-upping".
I learned patience and grace at a very young age as I had to navigate these conversations. I understood that the stories people shared with me in these instances were not any less real or important, it’s just that in that moment it felt that they were not interested in what I was going through, given that they were frequently trying to compare their acute injuries to my chronic, debilitating, autoimmune disease.
When I told people my story, people were so focused on trying to relate to an experience with a bone or joint that they missed what I was trying to convey—that I was embarrassed I got extra time to complete an assignment, that I was devastated when I had to quit the field hockey team, that I was excited to start a chemotherapy medication to control my disease because I just wanted to lead a normal life.
The other thing that happened in these situations is that I eventually shut down. It took too much time and energy to tactfully reframe what I was trying to convey when someone already colored my story with their bias about a joint-related situation. This is an example of what I noted in my previous post about the potential harm there is in believing and saying “we are all patients”—it can silence those who are trying to be heard.
But by identifying these pitfalls, we have the power to do something about them.
Regardless of if people misuse the term, empathy is what helps us connect with each other, and provides motivation to make the world a little better for those around us. I wrote about what it was like being an empath when the pandemic started. And if the pandemic has taught us anything, it’s that we have to look out for one another. Each of us has the power to make a difference.
I am so grateful to all of you who are working to improve the lives of patients. As I mentioned in my last post, we need allies in patient advocacy to affect change, and those allies need not be patients themselves. And as we have explored in this post, being a patient (or acknowledging that you may be one in the future) is not a prerequisite for empathizing with patients.
Furthermore, empathy can be taught and refined. The first step towards empathy is to talk to patients in order to understand what they are going through. In doing so, you’ll be able to uncover what they are feeling—be it scared, frustrated, exhausted, or even hopeful—and you can then practice empathy by recalling a time you felt a similar emotion. Then, let this shared feeling be a motivator for you to speak up in a meeting, the reason you drive a project forward, and the purpose for your work.
Empathy has the power to bring us back to why we are here. Improving healthcare is not for the faint of heart. It’s not sexy, and there are few “quick wins.” Harness and replenish that empathy regularly, because patients need you!
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I want to personally thank you for reading this series, and for all the comments along the way. I’ve tried to tailor my posts based on your feedback, and am excited to share that the next series will move us from identifying the problems into a series of how-to guides to effectively work with patients. I truly believe each of us has the power to make a profound difference, and our impact is amplified when we work together—so who's ready to ask patients?!
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.
Savvy Cooperative helps the healthcare industry create patient-centered products and solutions by providing a marketplace for patient insights. Pharma and startups alike can connect directly with patients to participate in clinical, UX, and market research. Savvy’s unique co-op model leverages its members’ networks to quickly recruit diverse patients, and pays patients for sharing their insights! Savvy’s award-winning co-op has been featured in FastCompany, TechCrunch, The Boston Globe, and named one of the 50 Most Daring Entrepreneurs by Entrepreneur Magazine.
you have questions - patients have answers.