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Quality, Utility and Maturity Measured; Developing a Data Quality and Utility Label for HealthData@EU

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

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Programme(s)

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Topic(s)

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Funding Scheme

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HORIZON-CSA - HORIZON Coordination and Support Actions

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Call for proposal

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(opens in new window) HORIZON-HLTH-2023-TOOL-05

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Coordinator

INSTITUTO ARAGONES DE CIENCIAS DE LA SALUD
Net EU contribution

Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.

€ 534 672,50
Address
AVENIDA SAN JUAN BOSCO 13
50009 Zaragoza
Spain

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Region
Noreste Aragón Zaragoza
Activity type
Research Organisations
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Total cost

The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.

€ 534 672,50

Participants (33)

Partners (4)

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