Detailed description of project

BD4QoL objective is to improve HNC survivor’s Quality of Life through person-centred monitoring and follow-up planning by contribution of artificial intelligence and big data (multidisciplinary medical, environmental, personal feelings, socioeconomic and behavioral data) unobtrusively collected from commonly used mobile devices, in combination with multi-source clinical, -omic, socioeconomic data and patients reported outcomes, to profile HNC survivors for improving personalized monitoring and support. The analysis of newly detected QoL indicators will allow anticipating risks, inform patients and caregivers for personalized interventions to timely intercept and prevent long-term effects of treatment.

HNC survivors face many difficulties in implementing self-management in their daily life⁸ (e.g. grappling with having to self-manage, interpreting self-management) and must fight personal, health-related and structural barriers (e.g. access to appropriate health services). They exhibit highly individualized approaches to self-management that often fail to meet their own specific needs. This has obvious impacts on their health, anxiety and QoL and even more on healthcare and social costs. GPs and welfare services are not fully included into HNC post-treatment management nor have direct and coordinated links with the specialists engaged in survivors’ follow-up at the cancer center. Point-of-care physicians have limited insight on patients’ perceptions of QoL, based on few data collected during follow-up visits from patients’ interviews and – depending on hospital workflow – through structured Patient Reported Outcomes/Patient Reported Experience Measurement questionnaires (PROM/PREM) that measure body functions and health and psychological symptoms In this situation PoC specialists can only intervene when a late effect is reported or clinically diagnosed. So far, individual QoL trajectories have not been studied. Physicians are therefore applying standardized follow-ups which may delay recognition of late effects, and thus effective treatment. To improve follow-up efficiency, the QoL study group of the European Organisation for Research and Treatment of Cancer (EORTC) is actively working to include QoL as fundamental aspect in post- cancer care. Understanding and addressing individual survivor’s needs, interpreting signs and symptoms of survivors’ health and psychological status is paramount in head and neck cancer where timely interventions can make the difference in individual patient’s QoL⁹. However, despite instruments and tools for QoL monitoring,  such as e-PROMs/e-PREMs¹⁰, have demonstrated effectiveness for QoL improvement, difficulties and barriers hinder their practical use:

• For patients: the effort to continuous self-monitoring, to report PROMs/PREMs, to interpret and understand QoL measures and to access support with additional burden, and fear of changing the type of interaction with their health care
• For physicians: the concern that incorporating PROMs will alter the consolidated workflow, the conviction that PROMs data interpretation is more laborious than useful, and less relevant than their professional QoL evaluation.
• For healthcare institutions: organizational issues, diversity and un-connectedness of available data and tools and lack of cost-effectiveness

Type and scope of work provided

The services provided include the following:

• User requirements needs analysis
• Ontology development for the total ecosystem
• Technical implementation of integrated system (database design and services implementation)
• Mobile application
• Pilot running, evaluation and performance assessment