Activating cancer patients in research and care by effectively presenting PROs to patients using tailored narratives

Effective presentation of patient-reported outcomes (PROs) can promote patient activation, meaning that patients want and are able to take action to care for their own health. This can improve patients’ health-related quality of life (HRQoL). As PROs are often misinterpreted by patients, alternative, more patient-focused ways of PRO presentation are needed. This study aims to determine if presenting PROs to patients using personalized narratives improves patient activation.

What are personalized narratives?

Narratives are patients’ stories about health and disease. Personalized narratives are narratives in which the main character of the narrative is designed to resemble the reader’s characteristics, such as age, gender, and type of cancer. This leads to recognition, which can benefit understanding, recall, and effectiveness of the stories.

Why is this project needed?

Many patient complete patient-reported outcome measures (PROMs), or questionnaires about their health and HRQoL, as part of routine clinical practice. Currently, patients receive their PROs, meaning the results of the PROM they completed, presented in numbers and graphs. Unfortunately, many misinterpret these numbers and graphs. Because healthcare professionals (HCPs) infrequently inform patients about their PROs, patients miss out on the opportunity to use PROs to benefit their health, for instance by taking action based on their results.

To improve the presentation of PROs to patients, we conducted a pilot-study in which we presented personalized narratives alongside numerical PROs to patients. We concluded that narratives offered patients more context for their PROs. Narratives also provided recognition of patients’ experiences, providing them comfort. Please see Boomstra et al. (2024) for the full publication.

The project started in January 2025 with hiring the project coordinator.

Since then, the project has progressed from initial ethical approvals to active patient recruitment and data collection for Work Package 1 (WP1). The data collection of WP1 entails patient interviews, to collect authentic data for the patient narratives that will be created in this project. The first patient for WP1 was recruited on 23 May 2025.

Interviews for WP1 are now complete in the Netherlands, and are halfway complete in German- and Spanish speaking countries.

Work Package 2 has started in the Netherlands by collecting quotes from the Dutch interviews into a database. We are now exploring the creation of narratives with Large Language Models.

Ethical submission for the UK is still ongoing.

The project is currently rounding off Work Package 1, where we are still actively recruiting and interviewing patients in Germany and Spain. We are still working on ethical submission in the UK and hope to recruit and include patients soon.

The project has also started working on Working Package 2, where we have created a database of quotes and are now exploring how we can create narratives from these quotes.

We expect to have finished the WP1 interviews from German- and Spanish speaking countries in the spring.

We aim to find a way to create narratives by that time, so we can use the input from each country to make German, Spanish or Dutch narratives. We then aim to start with the online experiment before the summer of 2026. With the online experiment, we test different types of narratives on fluency, coherency and accuracy with  patients.

We still welcome new collaborators from English-speaking, German-speaking, and Spanish-speaking countries. Please reach out if you want to contribute to any of the work packages!

During or after treatment, cancer patients often fill out several questionnaires about their health and quality of life. We call these questionnaires Patient Reported Outcome Measures (PROMs). When patients receive their PROM results, it is often in numbers and graphs. These can be confusing and easily misunderstood. Patients often expect doctors to explain these results to them in consultations, but this does not always happen. If patients understand their PROM results better, they can take action based on the outcomes they receive.

In this study, we investigate if reading personalized narratives together with their PROMs results helps patients to become more engaged in their care.

Narratives are patients’ stories about their experience with health and disease. Personalized narratives are narratives in which the main character of the narrative is designed to resemble the patient receiving their results. Resembling characteristics include age, gender, and type of cancer.