Project description
Developing health data quality standards
Unlocking the full potential of health-related data remains a challenge for researchers, innovators, and policymakers within the HealthData@EU framework, where datasets are used for secondary purposes. The absence of standardised procedures hinders progress in secondary data reuse. In this context, the EU-backed QUANTUM project is developing a groundbreaking label mechanism designed to revolutionise the discovery of high-quality health datasets within the HealthData@EU. This mechanism includes conceptualising specifications of data quality and usefulness , small-scale testing, widespread implementation, engaging the data quality user community, and outreach efforts to key stakeholders. With a diverse consortium of 27 beneficiaries, 5 affiliated entities, and 3 associated partners, QUANTUM stands at the forefront of revolutionising HealthData@EU governance and capacity building.
Objective
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 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.
Consortium: For this purpose, 27 beneficiaries, 5 affiliated entities and 3 associated partners. The composition of the Consortium seeks to reflect the different roles and institutions in the governance of the HealthData@EU; virtually consider all types of data and science of interest; and gather the expertise of previous outstanding projects in the domain
Fields of science
Keywords
Programme(s)
Funding Scheme
HORIZON-CSA - HORIZON Coordination and Support ActionsCoordinator
50009 Zaragoza
Spain
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Participants (31)
1050 Elsene
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75015 Paris
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
31052 Toulouse Cedex 3
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
33404 Talence
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
69002 Lyon
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9860 OOSTERZELE
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20123 Milano
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8010 Graz
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1040 Bruxelles / Brussel
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1010 Wien
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46022 Valencia
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3521 AL Utrecht
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1000 BRUSSEL
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75012 Paris
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9052 ZWIJNAARDE - GENT
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10000 Zagreb
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00029 Helsinki
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00271 Helsinki
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75014 Paris
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53175 Bonn
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CITY GATE UNIT 1301 Mahon
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00161 Roma
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5058 Bergen
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
1011 JV AMSTERDAM
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
105 52 Athina
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0277 Oslo
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4099-002 Porto
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1050 189 Lisboa
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1000 Ljubljana
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3015 GD Rotterdam
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93326 Abensberg
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Partners (3)
NW1 2BE London
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CO4 3SQ Colchester
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75654 Paris
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