User-Centered Design for Digital Patient-Navigation Tools in Oncology: Scoping Review
This scoping review of 36 studies published between 2015 and 2025 finds that while user-centered and human-centered design principles enhance the usability and relevance of digital oncology navigation tools, their application remains inconsistent and often limited to iterative prototyping and usability testing, with significant gaps in participatory design and implementation evaluation across diverse cancer types and regions.
Original paper licensed under CC BY 4.0 (http://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Cancer care is a long, intricate journey that rarely follows a straight line. Patients must navigate a maze of appointments, complex treatments, and emotional hurdles, often while managing the logistics of daily life. To help people move through this system, hospitals and clinics use "patient navigators." These are trained guides who help patients find their way, schedule visits, and understand their options. In recent years, there has been a strong push to turn these human guides into digital tools—apps and websites that can offer support anytime, anywhere. The hope is that technology can make care more accessible and less overwhelming. However, for a digital tool to work, it must be easy to use and truly helpful to the people relying on it. This requires a specific approach to building software known as user-centered design. Instead of engineers guessing what patients need, this method involves asking patients, caregivers, and doctors directly what they need and testing the tools with them throughout the creation process.
A team of researchers recently set out to see how well this approach has been used in the real world. They conducted a broad review of scientific studies published between 2015 and 2025 to find out which digital tools for cancer navigation were built with the people who would use them in mind. They looked at 36 different studies that described the creation or testing of these digital aids. The researchers wanted to know not just if the tools worked, but how the designers went about building them. They examined who was involved in the design, what features the tools offered, and whether the process actually led to better care.
The review revealed a clear pattern in how these tools are currently being made. Most of the studies focused on building and testing the middle part of the process: creating a prototype and then checking if it was easy to use. The most common activities were building a draft version of the app or website and then asking patients to try it out to see if they could figure it out. While this is important, the researchers found that the process often started too late and ended too soon. Very few studies involved patients and doctors at the very beginning to figure out what problems actually needed solving. Even fewer studies followed the tools after they were launched to see if they worked well in a busy hospital or clinic over time. The designers were good at making sure the buttons were in the right place, but they often missed the bigger picture of how the tool fit into the daily lives of patients and the workflows of medical staff.
The tools themselves tended to focus on a narrow set of tasks. The majority were designed to provide information or education, helping patients understand their diagnosis or learn about treatment options. Some also helped with communication, allowing patients to message their doctors. However, the digital tools rarely addressed the practical, everyday barriers that make cancer care so difficult. Very few apps helped patients with financial worries, transportation issues, or the emotional stress of the disease. The researchers noted that while these tools were often rated as "usable" by the people who tried them, there was little evidence that they actually improved the overall flow of care or helped patients get treatment faster. The studies mostly measured whether people liked the app, rather than whether the app successfully connected patients to the care they needed.
Another significant gap was who was sitting at the design table. In almost every study, the primary voice was that of the patient. While listening to patients is essential, the researchers found that caregivers, family members, and the nurses or navigators who manage the care were rarely included in the design process. This is a missed opportunity, because these groups face different challenges. A caregiver might need a tool that helps them track medication for a family member, while a nurse might need a system that fits into their already packed schedule. By leaving these voices out, the resulting tools often fail to solve the coordination problems that happen between the patient and the medical team. The review suggests that for these digital tools to truly transform cancer care, the design process needs to expand. It must include a wider range of people, from the start of the project to the end, and it must look beyond simple usability to measure whether the tools actually make the journey through cancer care smoother, fairer, and more effective for everyone involved.
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