The space between specialists: Observations on the disconnected patient journey

When my mom was in the hospital on hospice, I noticed something about the medical system I hadn’t fully seen: a lack of coordinated, connected patient experience in the middle of complexity. It wasn’t just her care, but the full system of nurses, assistants, hospitalists, social workers, hospice staff, billing coordinators and even cafeteria employees. Each did their part for my mom and our family in her final weeks, but no one was responsible for bringing everything together into an experience that felt designed. 

I have seen this pattern in my own care as a two-time cancer patient. My treatment plans relied on multiple specialists, each handling a certain aspect of my care, yet no one coordinated the whole process for me. Figuring it out became my job. When I was concerned about new symptoms, I didn’t know what specialist to call. When I had questions on lab results that were ordered by one physician but impacted future treatment from another, I wasn’t confident in asking the right person for answers. At times, it wasn’t clear whether my care teams were even in sync with each other. At least, not in ways that mattered to me.

Over time, a pattern became clear.

Patients are not just receiving care, they must coordinate it themselves because the healthcare system does not connect all of the dots for them. They decide who to call or if they even do call. They carry information from one appointment to the next, if they can remember to. They try to process what was said while in an emotional state of mind. But if something is missed, remembered incorrectly or the cognitive load is too high, I’m not sure there is a system designed to catch it. This lack of coordination and connection defines the patient experience.

I saw this through my father’s care. As a Marine, he gets care through the VA. He is not comfortable with technology, so he doesn’t use the portal (or barely the TV remote). The only way to reach my dad is by phone. In my professional world, we’d likely call him an edge case, though with the number of seniors who use the VA for medical care, I’m not sure that’s true. After a recent sleep study, a doctor tried to reach him by email about urgent results needing followup, but my dad doesn’t use email. Two weeks later, a letter arrived. It said, “I tried to reach you by email, but unfortunately didn’t hear back.” She said it was critical he call for an appointment.

Another time, my dad got three calls in one day from different specialties, each wanting to schedule an appointment. Wanting to be agreeable, he booked them all on the first day offered, which meant visits on three different days. The hospital is an hour away from his home, and no one connected the interactions for him. I’m not sure they even knew about the other appointment needs.

Healthcare leaders could look to enterprise systems approach.

In my work in enterprise client experience, we design experiences as systems and journeys. From the contract signing to installation, onboarding, activation, and ongoing management, every interaction is part of the same experience. That means the work isn't just improving individual touchpoints, but connecting them. Aligning language across channels, reducing friction in team handoffs and making sure customers don’t have to carry context from one step to the next. We’ve even gotten to a point where a single person is assigned to guide the new customer experience from end to end. Not because one person does all the work, but because having one person simplifies the customer's experience.

But healthcare is built around visits. Each specialist, each visit and each interaction are seen as single care moments. Each moment has its own team, process and rules. Patients do not experience things this way. They experience their care as a continuous journey. And thus, from my experience, are forced to act as their own project manager.

Patient experience is shaped across many interactions.

The medical care systems I’ve experienced, including academic institutions and nationally recognized NCI cancer centers, provide outstanding clinical care in beautiful, peaceful facilities. They provide access to expertise, advanced treatment options, clinical trials and intentionally designed environments meant to offer support. But patient experience is not defined by clinical experience alone.

It’s the welcome staff, schedulers, billing and check-in people. It’s the CNAs who have the opportunity to have a personalized relationship, nurses who answer portal messages and technicians who run scans and tests. All the moments around seeing the physician are as important as the actual clinician experience within the patient journey. This journey is complex for many. That is why looking at complex enterprise experience design to learn about how friction points are found and improved upon makes sense. 

Until patient experience is designed as a connected and coordinated systems approach that guides the patient through their journey, patients will continue to be responsible for holding it all together. Designing an integrated journey should be the main goal of healthcare patient experience improvement.

Related research

Kern, L. M., Bynum, J. P. & Pincus, H. A. (2024). Care Fragmentation, Care Continuity, and Care Coordination—How They Differ and Why It Matters. JAMA Internal Medicine 184(3). https://doi.org/10.1001/jamainternmed.2023.7628

Pecora, A. (March 18, 2026). How Health Tech Leaders Can Help Care Move From Fragmentation To Continuity. Forbes. https://www.forbes.com/councils/forbesbusinesscouncil/2026/03/19/how-health-tech-leaders-can-help-care-move-from-fragmentation-to-continuity/

Guan, T., Chen, X., Li, J. & Zhang, Y. (2024). Factors influencing patient experience in hospital wards: a systematic review. BMC Nursing 23. https://doi.org/10.1186/s12912-024-02054-0