Digital Patient Profiles: Building Empathy at Your Company

I was diagnosed with type 1 diabetes (T1D) in 2009 at the age of 10. In the early years following my diagnosis, my parents served as the decision-makers. From choosing my clinical care team to selecting the technologies that I would use, my parents took the responsibility of guiding me through all of the chaos that comes with having T1D—especially as a child. Just like many others with T1D, as I grew older, I became more confident in my ability to manage my disease independently and slowly transitioned into the primary decision-maker.

At some point, it became fairly easy for me to recognize if I would have a strong, positive relationship with a new stakeholder in my diabetes management team, whether that be an endocrinologist, educator, or even new technology. In the beginning, however, I couldn’t really describe the specific criteria that I was looking for; I just knew that I could “feel” whether or not a new addition to my T1D management would be worthwhile.

It wasn’t until I started my training as a biomedical engineer that I finally realized what that specific criterion was: empathy. As an undergraduate studying biomedical engineering, I was taught that the most impactful engineers are those who truly understand the problem and the perspective of their users. I was instructed to spend a significant amount of time researching targeted users, “putting myself in their shoes”, and learning to empathize with their experiences.

My professors made a clear distinction between empathy and sympathy in the engineering landscape: empathy focuses on connecting with your users and trying to understand their experiences while sympathy entails feeling pity or having judgment against your users. Empathy enables beneficial and productive engineering solutions, while sympathy drives low-impact, unwanted, and unnecessary innovations. I realized that when looking for new endocrinologists, I was checking to see if they if they could understand what it’s like to have T1D, if they would focus on empathizing with my experiences, and if they would be willing to listen to my specific needs.

In terms of technology, I think every person with T1D has experienced a moment where they question why a certain device works the way it does, or whether the device is actually solving an important problem. Diabetes-focused companies, whether medical device or therapeutic, are not expected to only employ people who have or understand T1D. Thus, it is essential that these companies—who ultimately profit off the T1D community—ensure that their employees can fully empathize with their users.

With the advancements in virtual meeting platforms, gaining patient stories and perspectives should be easier than ever. I had the opportunity to participate in a patient profile interview with Embecta, a diabetes technology company that manufacturers syringes, pen needles, and soon an insulin patch pump. This short, thirty-minute interview was focused on my life as a person with T1D, my struggles and successes with the disease, and most importantly, what I would hope my future with T1D looks like. I was excited that a lot of the interview was dedicated to what I think the future of T1D technology looks like, what sort of innovations I want to see, and what lacks in the current market. I was told that this interview would be shared with other members in the company and potentially in a patient profile database that employees could refer to. It was reassuring to participate in this experience as it helped me regain trust and faith in the companies working in the diabetes space.

I believe that every medical-focused company should set-up a digital patient profile database. Through this, new employees can learn about their users and eventually empathize with their experiences. This database can help inspire and motivate employees, remind them of who they are innovating for, and hopefully encourage the development of solutions that make a positive impact in someone’s life. Companies could use virtual interview platforms and compensation to greatly increase their reach, especially by sharing the information through communities like the Diabetes Link or platforms similar to the T1D Exchange.

In light of the widespread accessibility to virtual meeting platforms, it has become easier than ever for companies to collect stories and experiences from their users. Every company in the diabetes landscape has a responsibility to ensure that their employees are able to empathize, not sympathize, with their target users. Development of digital patient profiles could improve engineering practices, drive innovation, and result in better outcomes for people with T1D.

Thank you to embecta for sponsoring this article.