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

Programme(s):
HORIZON.2.1 - Health 
HORIZON.2.1.5 - Tools, Technologies and Digital Solutions for Health and Care, including personalised medicine

Topic(s): HORIZON-HLTH-2023-TOOL-05-09 - Developing a Data Quality and Utility Label for the European Health Data Space

Call for proposal: HORIZON-HLTH-2023-TOOL-05

Funding Scheme: HORIZON-CSA - HORIZON Coordination and Support Actions

Grant agreement ID: 101137057

Objective:

Context: Data users (i.e. researchers, innovators, regulation agencies and policymakers) 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