Guest post: REBECCA mobile application, patient empowerment at its best
Patient involvement in the development and design of the REBECCA 360º platform was identified as essential already at the planning stage of the project. This is how we at the Stockholm-based breast cancer association Amazona became a partner in the project where our role is to provide the patient perspective during all stages of the development process of REBECCA. Amazona is a patient organisation committed to supporting those who suffer from breast cancer as well as their close relatives.
The REBECCA 360º platform will collect data from patients’ smartphones and wearable devices on their physical activity, eating and sleeping habits, social media behaviour and perceived health. Given that such endeavour relies heavily on the patients’ willingness to share their personal data, patient input in all stages of the platform development is crucial.
In the initial stage of the project, Amazona hosted patient workshops and sent out a questionnaire to its members, seeking input that would help define the user requirements for the system. As a result, a group of 25 breast cancer patients from the Stockholm area was recruited to be involved in the co-creation process.
The first version of the REBECCA app was released at the beginning of 2022, and our member test group was invited to Amazona’s office to download the REBECCA mobile app. In groups of 3-5 people, the test persons received technical support and instructions from the REBECCA staff at Amazona on how to use the app. They were also given relevant information on the REBECCA project. The test persons were then asked to test the app for a week, which was followed by another visit to Amazona’s office to provide feedback on the app and its functions.
We at Amazona were amazed by the interest shown by our members to be involved in the study and their willingness to share personal data. We received valuable feedback which provided us with new insights.
- Several test persons pointed out that they would find it important to share data on the positive aspects of life as well, not just the functional or emotional problems often occurring in the post-treatment phase.
- The test persons underlined the importance of receiving feedback from the app on the data provided. This would give the patients the possibility to see trends in their own health status.
- The test persons emphasised that interacting with the REBECCA mobile app each day should not take too much time and highlighted that it is important to have the option to temporarily shut the application off, giving the patients the possibility to have control over their privacy
The feedback received during the first co-creation round will be used by the technical collaborators to further develop and improve the REBECCA app. The next version will again be tested by our members.
We strongly believe that for REBECCA to be a successful project and for its outputs to be used by the target group, it is essential to involve patients in all stages of the development. This will enhance patient empowerment and increase the active engagement of breast cancer patients in deciding about their own care, ultimately improving their quality of life.
This blog post was developed by Breast Cancer Society Amazona, REBECCA Consortium partner. Amazona is a non-profit association based in Stockholm, committed to supporting those who suffer from breast cancer as well as their close relatives, and to spreading knowledge about breast cancer and the importance of an early diagnosis.