Co-Design and Qualitative Development of a Patient-Reported Experience Measure (PREM) to Capture Cancer Patients’ Experiences of Peer Health Navigator Support

Cancer is a journey that often feels overwhelming, not just because of the illness itself, but because of the complex system patients must navigate to get care. In Australia, where cancer is a leading cause of death, the number of new cases has risen sharply in recent decades, driven by a growing and aging population. While survival rates have improved significantly over the last thirty years, the path to treatment remains fragmented and confusing for many. To help, hospitals are increasingly using Peer Health Navigators. These are not doctors or nurses, but ordinary community members who have lived through cancer themselves. They act as guides, using their shared experience to help patients understand their diagnosis, find their way through appointments, and feel less isolated. But for these programs to grow and improve, the people running them need to know if they are actually working. They need a way to ask patients, in plain language, what the experience was like.

Until now, there has been no specific tool designed to measure how cancer patients feel about the help they receive from these peer guides. Existing surveys often focus on medical outcomes or general hospital satisfaction, missing the unique, personal connection that a peer navigator provides. To fill this gap, a team of researchers, clinicians, and policy makers partnered with people who have lived experience of cancer to build a new survey from the ground up. They did not simply write questions and hand them out; they used a method called co-design, where the people who will eventually take the survey helped create it. The result is a preliminary questionnaire, known as a Patient-Reported Experience Measure, specifically tailored to capture the nuances of peer support in cancer care.

The process began with a series of workshops held in late 2024 and early 2025. The researchers invited a group of seven people who had been diagnosed with cancer to join an expert panel alongside doctors, researchers, and health policy officials. These partners were treated not as subjects to be studied, but as equal co-investigators. In the first workshop, the group gathered to brainstorm what mattered most to them. Guided by a framework that looked at how patients access care, communicate with staff, receive emotional support, and feel empowered, the partners brainstormed the specific ways a peer navigator could help. They asked themselves questions like, "What is the most important part of the interaction between a patient and their guide?" and "What specific things should we ask to measure that?"

From these discussions, the team generated a long list of potential questions. They covered five main areas: how easy it was to get to the navigator, how well the information was explained, how the navigator helped coordinate different parts of the treatment, the emotional and practical support provided, and whether the patient felt more confident in making decisions about their care. The partners suggested different ways to answer these questions, such as simple yes-or-no choices or scales where they could rate their agreement. This initial list was then refined in a second workshop, where the group split into smaller teams. One team, made up of the people with lived experience, focused on whether the questions felt clear and meaningful to a patient. The other team, consisting of clinicians and researchers, looked at the structure of the survey to ensure it would be practical for hospitals to use. They worked together to simplify the language, ensuring that a person in the middle of a difficult treatment could read and understand every word without confusion.

To make sure the final draft truly worked, the researchers conducted a third phase of testing called "think-aloud" interviews. They invited four of the partners to sit down individually and read the survey questions out loud, speaking their thoughts as they went. They were asked to explain what they thought each question meant and how they would decide on an answer. This revealed small but important details. For instance, some phrasing was slightly ambiguous, or a response option didn't quite fit a patient's situation. Based on this feedback, the team made minor adjustments to the wording and the layout. They added a "not applicable" option for questions that might not fit every patient's journey and ensured the survey flowed logically from the time before a navigator was assigned to the time after.

The final result is a draft survey containing thirty-one questions organized into nine distinct sections. It starts by asking patients to rate their overall experience on a scale from one to ten. It then asks them to reflect on how they felt before they met their navigator—whether they were fearful, confused, or feeling in control—and compares that to how they felt after receiving support. The survey moves through specific areas, asking if the navigator helped them understand wait times, find reliable information, or organize their appointments. It also explores the emotional side, asking if the navigator helped them feel supported or connected to a community. The survey concludes with open-ended questions, giving patients space to write down what was most helpful or to suggest improvements.

The authors are careful to note that this is a preliminary measure. While the co-design process ensured the questions are clear, relevant, and grounded in the real experiences of patients, the survey has not yet been tested on a large scale to prove its statistical reliability. The team plans to conduct further research to see how well the questions perform when used with hundreds of patients. However, this initial work marks a significant step forward. By building the tool with the people it is meant to serve, the researchers have created a foundation that truly reflects what matters to cancer patients. It offers a way to listen to their voices directly, ensuring that peer health navigator programs are not just well-intentioned, but genuinely effective in helping people navigate one of life's most challenging journeys.