Projeto: SEP-210936659

Designação do projeto:	QUANTUM - Quality, Utility and Maturity Measured; Developing a Data Quality and Utility Label for HealthData@EU
Código do projeto:	SEP-210936659
Instituição proponente/ Promotor líder/ Entidade coordenadora:	INSTITUTO ARAGONES DE CIENCIAS DE LA SALUD
Parceiro(s) / Co-promotor(es) / Instituição(ões) participante(s):	ASSISTANCE PUBLIQUE HOPITAUX DE PARIS; BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC); BUNDESINSTITUT FUR ARZNEIMITTEL UND MEDIZINPRODUKTE; CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE; CESSDA ERIC; CHU HOPITAUX DE BORDEAUX; DIGITALEUROPE AISBL; Direktoratet for e-helse; ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK; ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM; ETHNIKO KENTRO KOINONIKON EREVNON; EUROPEAN DIGITAL HEALTH ACADEMY GGMBH; European University Hospital Alliance; Faculdade de Medicina da Universidade do Porto; GESUNDHEIT OSTERREICH GMBH; Health Data Research UK; HEALTH INFORMATION AND QUALITY AUTHORITY; HOSPICES CIVILS DE LYON; HRVATSKI ZAVOD ZA JAVNO ZDRAVSTVO; HUS-YHTYMA; Institut National de la Santé et de la Recherche Médicale - INSERM; ISTITUTO SUPERIORE DI SANITA; KONINKLIJKE NEDERLANDSE AKADEMIE VAN WETENSCHAPPEN - KNAW; NACIONALNI INSTITUT ZA JAVNO ZDRAVJE; PLATEFORME DES DONNEES DE SANTE; Sciensano; SPMS - SERVICOS PARTILHADOS DO MINISTERIO DA SAUDE EPE; STICHTING HEALTH-RI; TERVEYDEN JA HYVINVOINNIN LAITOS; THE EUROPEAN INSTITUTE FOR INNOVATION THROUGH HEALTH DATA; Univ. Cattolica del Sacro Cuore; Universidad Politecnica de Valencia; University of Essex; VLAAMS INSTITUUT BIOTECHNOLOGIE FLANDERS INSTITUTE FOR BIOTECHNOLOGY
Data de início:	2024-01-01
Data de conclusão:	2026-06-30

Objetivos, atividades e resultados esperados/atingidos

Context: Data users (i.e., researchers, innovators, regulation agencies and policy-makers) need high-quality data. In HealthData@EU, data holders are expected to make their datasets available for secondary use, providing a notion of their quality and utility and the maturity of their data quality procedures. In article 56 in the HealthData@EU proposed regulation, this notion would take the form of a label.

Goal: Overall, QUANTUM aims at developing and implementingGoal: Overall, QUANTUM aims at developing and implementing a label mechanism that could be ideally adopted in the future HealthData@EU.

Methods: QUANTUM builds on 5 technical work packages (WP). WP1 conceptualises and provides technical specifications for a data quality, utility, and maturity label. WP2 designs and tests, at small-scale, the label. WP3 implements the labelling mechanism in a number of data holders. WP4 engages the data quality users' community; and, WP5 outreaches other interested parties, including other initiatives building HealthData@EU.

Expected results: a) A common concept of datasets Quality and Utility and Data holders' Maturity; b) Technical specifications for the label (Deliverable D1.1. and D1.2); c) A conformance checking tool that yields the label (D2.1); d) An implementation report of the label mechanism (D3.1); e) Recommendations for a large-scale implementation of the QUANTUM label mechanism (D3.2); and, f) The QUANTUM Exchange Platform and Academy (D4.2 and D4.3) as instruments for capacity building.

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