The patient enters the system. And gets lost in it.

2026

The perspective of those who suffer most from operational inefficiency.

In previous articles, I discussed waste, technology, automation, and leadership. Today I’m shifting perspectives and focusing on those who truly matter: the patients.

Imagine you have a scheduled appointment. You arrive at the hospital, check in, wait, are called in, see the doctor for fifteen minutes, leave with a request for tests and a referral to a specialist. In the following days, you try to figure out where and when you can get the tests done, wait for the results, wait for the specialist appointment to be scheduled, and repeat part of your medical history because the new doctor doesn’t have access to your previous records.

At no point did he feel he was being guided. He felt he was navigating alone in a system that was designed for its providers… not for him. This is not an isolated case. It is the experience, and perhaps not that of a minority….

There’s a concept in the literature called ” treatment burden ,” the weight that the healthcare system itself imposes on the patient. It’s not the illness itself, but everything surrounding its treatment: scheduling appointments, repeating information, managing referrals, interpreting results, dealing with unpredictable waiting times. In the United States, it’s estimated that the administrative management of care consumes more than eight hours per month of the patient’s or caregiver’s time. And about 90% of adults have difficulty understanding medical information and insurance policies. The system asks the patient to be their own project manager, without giving them the tools to do so.

Fragmentation as the norm

A nationwide Danish study, published in BMC Medicine in 2023, analyzed 4.7 million adult citizens and concluded that fragmented care is associated with inappropriate medication and higher mortality. Fragmentation is not an inconvenience; it is even a clinical risk.

An editorial published in JAMA Internal Medicine in 2024 reinforces this idea: in the United States, 35% of Medicare beneficiaries consulted five or more doctors in 2019. Having multiple providers may be clinically justified, but without effective coordination it leads to medical errors, unnecessary consultations, and avoidable hospitalizations. And even after the widespread dissemination of electronic health records, 34% of primary care physicians report not receiving useful information from specialists about the patients they referred. A systematic review by Joo (2023) on fragmentation and chronic diseases confirms that fragmentation increases the length of hospital stays and hospital readmissions—precisely in patients who most depend on continuity of care.

In 2024, 3.6% of the European population in need of medical care reported not having received it. In Greece, that figure rises to 21.9%. But these numbers only measure those who did not access the system. They do not measure those who entered and got lost within it.

Sources: Prior et al. (2023). Healthcare fragmentation and mortality: a Danish nationwide cohort study. BMC Medicine, 21, 305. DOI: 10.1186/s12916-023-03021-3 / Eurostat (2025). Unmet needs for medical care in 2024. / Kern, Bynum & Pincus (2024). Care Fragmentation, Care Continuity, and Care Coordination. JAMA Internal Medicine, 184(3), 236–237. DOI: 10.1001/jamainternmed.2023.7628 / Joo (2023). Fragmented care and chronic illness patient outcomes: A systematic review. Nursing Open, 10, 3460–3473. DOI: 10.1002/nop2.1607

The patient doesn’t see the process, they feel it.

For those who manage or provide care, the process is a set of steps, responsibilities, and systems. For the patient, the process is an experience, and that experience rarely receives the same attention as clinical protocols.

Research published in the European Journal of Health Economics, using data from 132 Swiss hospitals, demonstrated that hospitals with better patient-reported experiences have higher future revenue and lower operating costs. Patient experience is not just an ethical issue; it is an indicator of operational performance.

And yet, coordination is rarely measured from the perspective of those who experience it. A study published in the Journal of Patient-Centered Research and Reviews (Vimalananda et al., 2023) developed, for the first time, a validated questionnaire to measure the specialty coordination experienced by the patient—completing the so-called “specialty triad” (patient, family doctor, specialist). Until then, only instruments to measure the perspective of providers existed. The fact that this instrument only emerged in 2023 says a lot about the historical priorities of the system.

Source: Giese et al. (2024). Patient-reported experience is associated with higher future revenue and lower costs. European Journal of Health Economics, 25, 1031–1039. DOI: 10.1007/s10198-023-01646-y / Vimalananda et al. (2023). Patients’ Experience of Specialty Care Coordination: Survey Development and Validation. J Patient Cent Res Rev, 10(4), 219–230. DOI: 10.17294/2330-0698.2027

Designing for the patient or for the system?

Almost all processes in healthcare were designed from the inside out: starting with specialties, services, shifts, and computer systems. How many processes are co-created with the participation of patients, and even caregivers?

Evidence on co-design in healthcare is beginning to provide answers. A bibliometric review published in 2023 in ClinicoEconomics and Outcomes Research (Silvala et al.) analyzed the literature on participatory approaches in the design of healthcare services and concluded that patient involvement in process design improves efficiency, clinical quality, and operational costs. However, the same review warns: success depends on genuine patient engagement and productive relationships between users, caregivers, and professionals, not on symbolic participation. Simply placing the patient in a room is not co-design. Empowering them to influence the outcome is.

Changing this is management. It means measuring what the patient experiences, the total time spent in the system, the number of transitions they go through, and the information they lose between providers.

The patient is the only one who goes through the entire process. That’s why their perspective is the most valuable for anyone who wants to improve it.

Source: Silvola et al. (2023). Co-Design as Enabling Factor for Patient-Centred Healthcare: A Bibliometric Literature Review. ClinicalEconomics and Outcomes Research, 15, 333–347. DOI: 10.2147/CEOR.S403243

In the next article: the same patient, the same diagnosis, completely different treatments. The unwanted variation and what it reveals about healthcare systems.