Patient involvement in the co-creation process highlighted at the 4th Meeting of Minds of the Cancer Survivorship – AI for Well-Being Cluster
On 23 and 24 February, the REBECCA project participated in the 4th Meeting of Minds of the Cancer Survivorship – AI for Well-Being Cluster. The event titled ‘How can new technologies better support patients?’ aimed at gathering patient feedback on the digital, AI-based tools that the Cluster members are designing to improve the Quality of Life of cancer patients and survivors. This was the first event of the Cluster open to the public.
On 23 February, patients working on the Cluster projects were brought together for a roundtable discussion to share their thoughts on the ongoing work of the projects. Ms Roelinde Middelveld, a patient representative from the Breast Cancer Society Amazona participated in the discussion.
Speaking about technology as a barrier when embedded in the routine care process of older adults with cancer, Ms Middelveld underlined the importance of involving patients from the very beginning in the development of digital tools used in research. She reflected in particular on the participation of Amazona in the REBECCA project, where the organisation has taken an active role in engaging with the patient population and gathering their input through focus groups and questionnaires. In addition to seeking their feedback on the type of data they would be willing to share, data security, control and access, Amazona also sought patient feedback on the digital tools patients themselves use.
Ms Middelveld emphasised that there was a very high interest among Amazona members to participate in the REBECCA research, considering, in particular, the importance of communicating clearly to the patients on why their data is being collected and how it would benefit them. Amazona has gathered input from two age groups of women, under 60 and above 60 years of age, and both groups showed equal enthusiasm to participate in the research.
Ms Middelveld also spoke to the importance of continually involving patients in the co-creation process of digital tools designed to support the patient population and ensuring that patient feedback is taken on board. Additionally, she emphasised the importance of preparing healthcare providers to use the data collected to improve patient treatment because that is ultimately what the new digital tools are designed for.
» Watch the recording of the first day of the event
REBECCA patient mobile application and web browser plug-in presented on the second day
On the second day of the meeting, Dr Ioannis Sarafis from the Aristotle University of Thessaloniki and Mr Lazaros Apostolidis from the Centre for Research and Technology Hellas jointly presented the project vision and the progress on the two core prototype technologies that are under development: the REBECCA patient application and the REBECCA web browser plug-in.
Dr Sarafis kicked off the presentation by providing an overview of the REBECCA project, introducing the REBECCA vision, objectives, Consortium, the REBECCA 360º platform, and methodology. He then proceeded to present some of the features of the REBECCA patient mobile application.
The patient mobile application currently features the self-reported data function and continuous monitoring function. The self-reported data feature has two functionalities: annotated photographs and questionnaires. The annotated photographs help gain a better understanding of the patient’s eating habits and of the environmental stressors that the patient might feel. The questionnaires functionality offers patients a suite of questionnaires to choose from and can be triggered at the patient’s convenience.
The patient mobile application also features a functionality allowing for the continuous monitoring of patient location. Dr Sarafis underlined that the goal of this functionality is not to see the actual location of the patient but to create privacy-preserving indicators which are related to the patient’s functional status. By identifying the points of interest, such as home, work, public parks, recreational facilities and similar, the application provides insights as to how the patient moves in their local environment. This data helps determine the patient’s functional status. The evolution of data, that is, changes in points of interest and the timeline associated with it, would indicate functional or emotional problems of the patient. Dr Sarafis emphasised that the points of interest and the associated timeline are never revealed to the caregivers.
He concluded his presentation by announcing the next steps in the development of the mobile application: the integration of the mobile application with a smartwatch and the development of a companion application, which will enable the patient’s companions to record the patient’s status.
Mr Apostolidis presented the REBECCA browser plug-in which collects the pseudonymised data from patients’ online activity. The beta version that has been developed monitors Facebook, YouTube and web browsing. The Settings view allows patients to pause or resume monitoring at their convenience, while the Data view allows patients to inspect all the data collected from their online activity through the browser plug-in.
The browser plug-in collects data on URLs the patient is visiting, search queries, visits to Facebook profiles and groups, comments and reactions to Facebook posts, YouTube subscriptions, comments on videos, and reactions to videos and comments. At any given point, the patient can filter the data collected by date, by using a specific search term or by page size. The filtering option allows patients to delete the data they do not feel comfortable being analysed. They can delete individual records, all the data from a specific source or even all the data collected.
The next step in the development of the browser plug-in is the addition of the ‘buffer’ which will allow patients to review data before analysis and the addition of a feature allowing patients to define web-specific sources that they want to be excluded from monitoring.