A5030176667- Childhood Cancer Survivors' Quality of Life
- Palliative Care and End-of-Life Issues
- Clinical practice guidelines implementation
- Artificial Intelligence in Healthcare
- Biomedical Text Mining and Ontologies
- Family Support in Illness
- Electronic Health Records Systems
- Colorectal Cancer Screening and Detection
- Adolescent and Pediatric Healthcare
- Context-Aware Activity Recognition Systems
- Data Quality and Management
- Scientific Computing and Data Management
- Research Data Management Practices
- Global Cancer Incidence and Screening
- Research in Social Sciences
- Chronic Disease Management Strategies
- Pharmaceutical Quality and Counterfeiting
- Healthcare Systems and Technology
- Lung Cancer Research Studies
- Health Systems, Economic Evaluations, Quality of Life
- Machine Learning in Healthcare
- Mobile Health and mHealth Applications
- Ethics in Clinical Research
Health Level Seven International
2014-2024
Abstract Background FAIR (findability, accessibility, interoperability, and reusability) guiding principles seek the reuse of data other digital research input, output, objects (algorithms, tools, workflows that led to data) making them findable, accessible, interoperable, reusable. GO - a bottom-up, stakeholder driven self-governed initiative defined seven-step FAIRification process focusing on data, but also indicating required work for metadata. This aims at addressing translation raw...
The prevalence of chronic diseases has shifted the burden disease from incidental acute inpatient admissions to long-term coordinated care across healthcare institutions and patient's home. Digital ecosystems emerge target increasing costs invest in standard Application Programming Interfaces (API), such as HL7 Fast Healthcare Interoperability Resources (HL7 FHIR) for trusted data flows.
Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal technical barriers. The FAIR4Health project facilitated promoted application FAIR principles in derived from publicly funded initiatives make them Findable, Accessible, Interoperable, Reusable (FAIR). To confirm feasibility solution, we performed two pathfinder case studies carry out federated machine learning algorithms on FAIRified datasets five organizations. demonstrated potential impact...
Background To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of Survivorship Passport (SurPass) has been invented. Within European PanCareSurPass project, semiautomated interoperable SurPass (version 2.0) will be optimized, implemented, evaluated at 6 LTFU centers representing countries 3 distinct health system scenarios: (1) national electronic information systems (EHISs) in Austria Lithuania, (2) regional or local EHISs...
Medical data science aims to facilitate knowledge discovery assisting in data, algorithms, and results analysis. The FAIR principles aim guide scientific management stewardship, are relevant all digital health ecosystem stakeholders. FAIR4Health project encourage the research community reuse datasets derived from publicly funded initiatives using principles. 'FAIRness for FHIR' provide guidance on how HL7 FHIR could be utilized as a common model support FAIRification process. This first...
Telemedicine can provide benefits in patient affected by chronic diseases or elderly citizens as part of standard routine care supported digital health. The GATEKEEPER (GK) Project was financed to create a vendor independent platform be adopted medical practice and demonstrate its effect, benefit value, scalability 8 connected use cases with some pilots. This paper, after description the GK architecture, is focused on creation FHIR (Fast Healthcare Interoperability Resource) IG...
<ns3:p>Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal technical barriers. The FAIR4Health project facilitated promoted application FAIR principles in derived from publicly funded initiatives make them Findable, Accessible, Interoperable, Reusable (FAIR). To confirm feasibility solution, we performed two pathfinder case studies carry out federated machine learning algorithms on FAIRified datasets five organizations. demonstrated potential...
Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims capture key data about their treatment, well personalized recommendations care plan with aim support long-term survivorship care. PanCareSurPass (PCSP) project building on experience gained an earlier implementation Giannina Gaslini...
The International Patient Summary Standard (EN 17269) normalizes the dataset within European Guideline on cross-border exchange of a patient summary. This has been widely appreciated and taken as basis for projects in both Europe wider afield, e.g. U.S.A, Canada more. is relatively mature it currently its third iteration (i.e., 2013, 2016, 2020). Even so, to move from policy-driven guideline formal standard was not straight forward. paper describes how 'minimal non-exhaustive' could be...
Having the administrative and clinical information concerning patient presented in a comprehensible format, language, terminology is valuable for any healthcare provider.In Europe, this type of represented by Patient Summary Guideline on other side Atlantic Continuity Care Document (CCD).Trillium Bridge project co-funded European Commission that "compares specifications EU US summaries with aim developing testing common consistent systems enabling interoperability electronic health records...
The International Patient Summary (IPS) standards aim to define the specifications for a minimal and non-exhaustive Summary, which is specialty-agnostic condition-independent, but still clinically relevant. Meanwhile, health systems are developing implementing their own variation of patient summary while, eHealth Digital Services Infrastructure (eHDSI) initiative deploying services across countries in Europe. In spirit co-creation, flexible governance, continuous alignment advocated by...
The European Project GATEKEEPER aims to develop a platform and marketplace ensure healthier independent life for the aging population. In this role of HL7 FHIR is provide shared logical data model collect in heterogeneous living, which can be used by AI Service Gatekeeper Implementation Guide was created purpose. Independent pilots IG illustrate impact approach, benefit, value, scalability.
Innovation in cancer therapy has increased childhood survival rates. However, survivors are still at risk of developing late effects. In the digital transformation health sector, Survivorship Passport (SurPass) can support long-term follow-up care plans. Gaps seamless connectivity among hospital departments, primary care, combined with time professionals required to collect and fill-in data SurPass, barriers its adoption daily clinical practice. The PanCareSurPass (PCSP) project was...
The Survivorship Passport (SurPass) for childhood cancer survivors provides a personalized treatment summary together with care plan long-term screening of possible late effects. HL7 FHIR connectivity Electronic Health Record (EHR) systems the SurPass has been proposed to reduce burden collecting and organizing relevant information. We present results testing validation efforts conducted across six clinics in Austria, Belgium, Germany, Italy, Lithuania, Spain. also discuss ways which this...
The GATEKEEPER (GK) Project was financed by the European Commission to develop a platform and marketplace share match ideas, technologies, user needs processes ensure healthier independent life for aging population connecting all actors involved in care circle. In this paper, GK architecture is presented focusing on role of HL7 FHIR provide shared logical data model be explored heterogeneous daily living environments. pilots are used illustrate impact approach, benefit value, scalability,...
Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of treatment throughout their lives. There is a lack evidence-based guidelines on optimal strategies period to 5 years after diagnosis. We aimed address this gap by developing recommendations short-term based existing long-term follow-up (LTFU) care guidelines. The guideline working group, consisting healthcare professionals, parents survivor representatives 10...
<sec> <title>BACKGROUND</title> To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of Survivorship Passport (SurPass) has been invented. Within European PanCareSurPass project, semiautomated interoperable SurPass (version 2.0) will be optimized, implemented, evaluated at 6 LTFU centers representing countries 3 distinct health system scenarios: (1) national electronic information systems (EHISs) in Austria Lithuania, (2)...
This paper provides a summary of the Privacy Management Analysis method followed for analysis International Patient Summary exchange use cases Trillium II Project. The objective is to recommend required security and privacy measures by providing traceability from Regulations/Principles/Preferences recommended Security & Measures that needs be implemented in pilots.
The Medical Product Information found in most medication boxes offer a wealth of information, including terms active ingredients, excipients, indications, dosage, route administration, risks, and safety information. Digital health services that help patients, their care givers, professionals to manage medication, can be improved with tailored information based on user profile, the patient's Electronic Health Record (EHR) summary, Medicinal Information. electronic (ePI) comprises summary...