NEW Patient-Led REBECCA App Feature: A Milestone in Cancer Survivor Well-being Enhancement

One of the main strengths of the REBECCA project is the active participation of the patients themselves in the design and functionality of the REBECCA system. In REBECCA this is not implemented in an abstract, theoretical fashion, but is instead an impactful process that directly affects the data collection and analysis components of the system based on patient needs and desires.

An excellent example of such an element, identified by patients, communicated to the health and technology partners in the consortium and eventually being integrated into the system, is the functionality of reporting positive daily life events (instead of only reporting health challenges and negative life issues). Thus, from the beginning of the co-creational process, after the patients received the first descriptions of the REBECCA data collection system, it became obvious that the users themselves evaluated the data collection system (including patient self-reporting components) as being focused only on negative aspects of life, ignoring an important aspect of patient existence; namely, their strong desire to overcome cancer and their self-empowerment for enjoying their day to day life activities. This need was first expressed by the members of the Stockholm-based breast cancer patient association Amazona but was later also confirmed, independently, by patient-centric focus groups in Valencia and Stavanger. In summary, participants expressed a strong desire across different countries to not only spotlight challenges but also to actively capture and report the positive aspects of their daily lives through the REBECCA mobile app.

Derived from this feedback and with the aim of enriching their overall well-being, Karolinska Institutet (KI) initiated a brainstorming process, together with the patients, to identify what could constitute a “positive event” in the daily lives of breast cancer survivors. Initially, KI involved 10 women from local research groups to create a first list of potentially important positive life events to be reported, asking researchers to share their insights and thoughts, during September 2023. KI, then performed a preliminary categorization of these ideas in general domains (e.g., social interaction, new experiences/hobbies, enjoying life’s simple things) to make them easier to organise and report from within the app. Afterwards, the preliminary list was communicated to the consortium partners ensuring that these ideas resonate with the broader health and scientific community. Finally, the modified list of positive events was discussed in two comprehensive meetings with patient representatives of Amazona during October 2023, to finalize these categories and ensure that the reporting system aligns with the expectations of the breast cancer survivors.

Following extensive discussions with Amazona representatives, a key insight emerged, which was the dynamic nature of patients’ lives. What brings joy and happiness to someone today might be perceived as stressful on another day. Considering this, the REBECCA app designers, together with the implementation experts decided that the latest version of the app will include an inclusive reporting option entitled “Life Events”. Upon selecting the “life event” button, users will encounter two choices: “Positive” and “Negative” (with final wording pending consideration). This innovative feature empowers users to not only report challenges but also capture and report positive moments. Users can document these events by capturing a picture, and a curated list of categories (e.g., social contacts, nature/environment health/wellness etc.) will be available to facilitate reporting.

This user-driven enhancement of the REBECCA app marks a significant milestone in the project’s mission to improve the quality of life for breast cancer survivors while considering their needs and preferences. In this case, this is expressed by providing the patients with the option to record their daily experiences, both positive and negative, adapting the reporting itself to the evolving nuances of daily life. Using such co-creative feature development as a main design principle the project will continue to support the well-being of breast cancer survivors and explore new avenues for their empowerment!