PALLIAKID

PALLIAKID is an interdisciplinary project aiming to evaluate the feasibility, effectiveness, and cost-effectiveness of novel interventions for children and young people with palliative and end-of-life care needs in different healthcare systems across Europe, focusing on those factors that affect the active engagement of patients and family caregivers. In PALLIAKID, the partners are committed to respond to the main current gaps in Paediatric Palliative Care (PPC), contributing to empower children, adolescents, young people (AYAs) and their family caregivers, and improving their Quality of Life (QoL). To this aim, PALLIAKID has identified three cornerstones of PPC to address the aforementioned challenges:

• Early identification of children and AYAs with palliative and end-of-life care needs: PALLIAKID aims to develop an Early Detection System (EDS) to identify and stratify children and AYAs with PPC needs. The EDS will include a predictive model using ML algorithms to conduct this detection. In line with the latest research results, PALLIAKID will build its predictive model trained on available Electronic Health Records (EHRs) data related to diagnosis, functional limitations, dependency, complexity, and healthcare recourses utilisation. The aim is to design a predictive model that should identify children and AYAs with different conditions, complexity levels and healthcare resource utilisation. Besides, this early detection system will be designed to run nearly real-time to screen large amounts of inpatient and outpatient children and AYAs.
• Comprehensive assessment of children’ and AYAs’ needs and those of their caregiving environment (mainly family caregivers and siblings): PALLIAKID will adapt and validate the HexCom model to the paediatric field, and it will also include cultural and contextual (i.e., healthcare structure in different EU countries) adaptation. PALLIAKID Needs Assessment HexCom will be developed in co-creation with patients, family caregivers and professionals. This tool will be used by healthcare professionals, patients, and family caregivers, with different formats and contents adjusted to each profile. In addition, the PALLIAKID Patient Journey digital platform will foster patients’ and family caregivers’ health literacy, engagement and empowerment.
• Design of a comprehensive, personalised, interdisciplinary care plan that includes the advance care planning (ACP): PALLIAKID will adapt and validate ACP tools and strategies for genuinely shared decision-making that will include the patients’ participation with an age-appropriate approach (when possible).

SRDC will lead the development and technical validation of the Early Detection System (EDS) in the project. In this context, SRDC will carry out the design of the module, develop a common data model compliant with clinical data standards, harmonize healthcare datasets from different clinical sites through a standards-based data preparation pipeline based on this model, develop predictive models using machine learning and federated learning techniques on the collected data, and create user interfaces for presenting these models to users. Throughout this process, SRDC will utilize its previously developed data processing and harmonization products (onFHIR – Health Data Repository, toFHIR – Data Transformation Engine, onfhir-feast – Dataset Repository). SRDC will also lead an Early Feasibility Study to clinically validate the developed EDS using prospective patient data and equip health professionals at clinical sites to use the PALLIAKID EDS for early detection in PPC.