Well-Being//

Empowering the Patient Voice When You’re Not a Patient Yourself

My nontraditional career path led me to a new point of view on compassion and empathy.

Adobe Stock/ Blended Images
Adobe Stock/ Blended Images

For better or worse, I’ve never been a stranger to hospitals. The tiled hallways, the patients, the rush of nurses and doctors, the emotional weight of those spaces. Growing up in a multigenerational family, hospitals were familiar territory. 

I saw many recoveries, and the adaptation to chronic illness, but also the losses. Cancer fit both categories — survived but “chronic” for some; deadly for others.

One of the most difficult memories comes from when I was about 20 years old. My grandfather had to be restrained to his hospital bed because his pain medication had made him disoriented. A surgical error early in his treatment had led to a three-year period of surgery after surgery. When the delirium hit, he seemed to relive the most harrowing of his WWII experiences. I begged the staff to help him. I knew they didn’t understand about the burning ship, or that this man had, essentially, raised me. 

Years later, as a social worker, I learned that hospital staff commonly refer to patients as their diagnosis — “the breast C.A. in room 302,” or “Your C-section just left recovery.” The practice is dehumanizing. Like my grandfather, we all come to any medical experience with everything else that has shaped us. Patients are whole people, not just their disease.

That core understanding has motivated me along every step of my career path, from social work, to patient services in the biotech industry, to head of patient engagement at Blue Note Therapeutics. In short, Blue Note creates therapy programs to address the unmet mental health and emotional needs of people facing cancer. These programs are delivered via computer or mobile device, allowing patients to access therapy any time, anywhere. 

The winding road to my current position started with those foundational experiences involving hospitals and healthcare systems. I became a hospital-based social worker because I wanted to address the emotional — technically, the “psychosocial” — experience of people facing illness. 

Unfortunately, as a social worker in that setting, I faced practical limits on ways to help patients. Too often, my role stopped at referring people to over-burdened community resources or insurance navigation because unnecessary road blocks seemed to be around every corner, even though I knew they needed and deserved more support. The economics made fuller counseling support impossible for far too many. 

Additionally, the social worker is generally not the most powerful person at the table, even though her role is to ensure the patient’s voice and needs are heard and should drive decision making.

In the late 1990s, when I transitioned to a biotechnology company designing and managing patient services, we talked — like repeating a mantra — about keeping patients “at the center of everything we do.” But now there were hundreds of thousands of patients that we talked to.

Many healthcare companies declare their commitment to being “patient centric,” but not so many have built a corporate culture where decisions are based purely on the needs of individual patients, or where the products are designed with patient needs as the top concern. Decisions in the biotech industry are complex and driven by market potential, not just patient needs. Similar to my experience as a social worker, those of us representing the voices of the patients were not the most influential people at the table. 

We’re building something different at Blue Note. As head of patient engagement and part of the founding team, my role is to make sure patients inform every decision we make.

Prior to joining the Blue Note team in 2019, I sometimes referenced Jeff Bezos and his practice of having an empty chair in every meeting, meant to represent the customer. But I was also conscious of the dangers of referring to “the patient” as if there’s a singular persona to which one can anchor.

How does a company make sure that level of individual experience is known, refreshed, ever present, never taken for granted, never over-simplified or genericized? It’s different from your typical standards for thinking about the “user experience.” It also seems more precious. The weight of responsibility of building for people experiencing life threatening illness is heavy and daunting and humbling.

When I first began talking with Geoff Eich, Blue Note’s CEO, I saw someone who shared my commitment to understanding, prioritizing, and serving patients. In fact, our products would be co-created with patients, which meant a commitment so strong that this role would be part of the founding team. 

Any digital health solution must solve the engagement challenge. If a product doesn’t connect with patients, keep their interest, and provide an experience they look forward to, they simply won’t use it and the intended therapeutic benefits will be lost. 

So how do we keep patients engaged? Empathy is the key. Empathic interactions in healthcare require that a patient is understood, that a provider communicates with the patient to make sure they are on the same page, and that the actions taken together reflect that shared understanding. 

For our small team of founders to develop a product that is empathic to those impacted by the distress associated with diagnosis, treatment, and survivorship of cancer, we focus on listening and doing our best to understand that experience through their eyes. It’s about building authentic relationships and trust. 

In this process, we’ve created a team of patients, our ambassadors, some of whom are known patient advocates or leaders in patient organizations, some who are “everyday” patients, but all of whom are committed to solving a problem they have experienced. Whether it’s a strategy meeting, brand positioning workshop, or team building, we want our patient ambassadors there. 

Over the course of my career I’ve led teams in service delivery, healthcare solution design, channel and distribution strategy, and other aspects of the biotech and healthcare industry. I have tried with only moderate success to champion solutions for the pressing psychosocial needs of patients. 

Finally, I have gathered these threads. I find myself at a company that values and needs someone with all of the experiences I bring. It’s exhilarating (and sometimes surreal). What has at times felt like a very indirect career path is now — at least from the rear view mirror — very deliberate and purposeful. And I share this opportunity with a team of people who believe in the need for absolute understanding of a diversity of perspectives, the urgency of their unmet needs, and the power of psycho-oncology tools. 

No longer am I limited to the “empty chairs” metaphor as a way to keep patient experience present in our work. The chairs around me are occupied by actual patients, and their voices are the most powerful at the table. 

If you know someone experiencing increased distress related to COVID-19 and having cancer, this program is available for FREE from Blue Note Therapeutics: covidcancercare.com

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