The Barcelona pilot is led by researchers from the Hospital Clínic de Barcelona (HCB) through the Fundació Clínic per a la Recerca Biomèdica (FCRB) and the iSYS Foundation. The pilot will also include other entities such as Primary Care Centres in Barcelona and the HCB Breast Cancer service.
This pilot is focused on breast cancer patients, more specifically, cancer survivors, which are patients who are no longer in active treatment for the disease, have finished chemotherapy and/or radiotherapy and have undergone breast cancer surgery. However, most of these patients continue with hormonotherapy medication for several years after cancer and suffer treatment side effects that persist long after they have recovered from cancer. As a result, objective of the pilot is to improve the quality of life of Breast cancer survivors. The primary aim of the Barcelona pilot is to enhance services to cancer patients by allowing patients to benefit from the learnings of the central ASCAPE system. By participating in this project, HCB with the collaboration of FundiSYS will continue to be a leader in Information Communication Technologies (ICT) targeting patient experience.
In the following infographic, we show the technical structure of the pilot. Along with ASCAPE, the Barcelona pilot will also use two recent ICT innovations developed between these two institutions to improve patient outcomes and experience: OntoCR, which has been created and owned by HCB, and the Xemio app, which has been created and owned by iSYS Foundation.
OntoCR (2)
OntoCR is a digital platform which allows the shared follow-up of breast cancer patients between HCB and primary care centers. For the ASCAPE project, OntoCR has added the functionality of implementing the QoL questionnaires and future interventions onto the platform. The QoL of life questionnaires are entered directly in the platform by the patients and are automatically evaluated. This functionality increases the speed at which information can be analyzed by doctors and eliminates possible human errors that may occur. This infrastructure is ready to be utilized in other systems such as hospitals or primary care centers, although some technical requirements will have to be adapted.
XEMIO
Xemio is a digital platform with informative content about breast cancer that uses vocabulary adapted to patient’s knowledge level. In addition, the information that patients access in the app is continuously updated and is validated by health professionals.
Xemio will improve the self-management of the disease by the patients as well as the physicians. The app allows patients to track their side effects, medications, tracks daily steps, and browse a social calendar of meetings designed for breast calendar. Another important aspect of this application is that the data collected in Xemio is automatically sent to OntoCR.
The side effects are measured through intensity scales adapted to each side effect. After the registration of the side effect and its intensity, a hygienic- dietary advice is offered with the goal of minimizing the negative effects of the treatment. In the same way, patients can find a medications list, with all the potential treatments and their descriptions.
In addition, the agenda collects all the events and social workshops organized by different associations from the Barcelona area, that may interest that patients using the app. To communicate these activities, the app sends push notifications to the patients. According to the Cohort DAMA study (1), increasing the social life of patients has direct benefits in the outcome of the disease. It’s shown that social activities help to reduce loneliness for breast cancer patients.
Lastly, we report to the users the number of steps they complete each day. The goal is that they will motivate themselves to stay physically active, achieve the the World Health Organization (WHO) recommendation of 150 minutes/week of moderate intensity exercise and maintain health habits.
ASCAPE implications
The incorporation of Xemio into the health record system will be done using OntoCR. Likewise, ASCAPE will also be integrated with OntoCR, thus making OntoCR the focal point of data collection and doctors’ access to patient data in the Barcelona pilot. ASCAPE, XEMIO and OntoCR will greatly advance the introduction of ICTs in the hospital and primary care system with the objective of improving the quality of life of breast cancer patients. One of the main particularities of the Barcelona pilot is that multiple physicians that are not directly involved with the ASCAPE project will interact with the ASCAPE platform themselves. To provide easy managing tools to health professionals is one of the main challenges of this pilot. The integration of ASCAPE with OntoCR will be crucial to increase the engagement of doctors with new technological tools.
Blog post prepared by FCRB and FundiSYS
(1) Rosa Puigpinós i Riera (ASPB), Margarida Pla i Consuegra (UB). (2017, diciembre). Cohort Dama (Influencia de determinantes sociales, estilos de vida, bienestar emocional y os de terapias no convencionales en la evolución del cáncer de mama). https://www.aspb.cat/wp-content/uploads/2017/12/Cohort-Dama-Resultados-descriptivos-cuantitativos_CASTELLA.pdf
(2) Lozano-Rubí R, Muñoz Carrero A, Serrano Bazalote P, Pastor X. OntoCR: A CEN/ISO-13606 clinical repository based on ontologies. Journal of Biomedical Informatics 2016; 60:224-233
doi: 10.1016/j.jbi.2016.02.007