Deliverable 5.8 PROJECT FORUM - FINAL REPORT
Authors: Mäkinen, Mari, Valenzano, Regina
Type: Project deliverable
Published: 2026-06-17
Keywords: project forum, stakeholder engagement, data quality and utility label, European Health Data Space (EHDS)

<h3>Executive Summary</h3>
<p>This deliverable reports on the objectives, implementation and results of the QUANTUM Project forum. The Project forum served as a key engagement platform for external stakeholders in the project. Four interactive online forums were organised to present and validate QUANTUM key deliverables with external stakeholders. The sessions included presentations, discussions and feedback gathering via interactive tools. The content and results of all four forum sessions are reported in this deliverable, as well as the impact they had on the QUANTUM work. The stakeholders highlighted, among other things, the need to manage data quality and utility label’s implementation burden especially on less mature organisations, to balance between excessive complexity that might undermine uptake and providing clear value for data users, and to balance standardisation with context‑specific notions of fitness for purpose.</p>
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<h3><span class="fontstyle0">Introduction</span></h3>
<p><span class="fontstyle0">This deliverable reports on the design, implementation and results of the QUANTUM Project forums, the project’s main structured mechanism for engaging external stakeholders in the development of a Union data quality and utility label and a maturity assessment framework for data holders under the European Health Data Space (EHDS) Regulation. Over four online sessions held between March 2025 and February 2026, the forums brought together a diverse community of EHDS-related initiatives, Health Data Access Bodies (HDABs), data holders and data users to discuss, test and refine key QUANTUM outputs, including the technical specification of the datasets’ quality and utility label, the maturity model for data holders, the mid</span><span class="fontstyle2">‑</span><span class="fontstyle0">scale pilot of the Data quality and utility labelling tool and the emerging fit</span><span class="fontstyle2">‑</span><span class="fontstyle0">for</span><span class="fontstyle2">‑</span><span class="fontstyle0">purpose (F4P) strategy.</span></p>
<p><span class="fontstyle0">Situated within QUANTUM’s broader mandate to translate EHDS Article 78 requirements into a practical, scalable labelling mechanism for HealthData@EU - the infrastructure designed to enable the secondary use of health data within the EHDS framework - the Project forums were conceived not as dissemination events, but as co</span><span class="fontstyle2">‑</span><span class="fontstyle0">creation and validation spaces where stakeholders could provide targeted feedback on draft deliverables and explore their feasibility in real</span><span class="fontstyle2">‑</span><span class="fontstyle0">world settings. Each forum combined focused presentations with interactive methods (e.g. Mentimeter, Wooclap and post</span><span class="fontstyle2">‑</span><span class="fontstyle0">meeting surveys) and follow</span><span class="fontstyle2">‑</span><span class="fontstyle0">up opportunities via a dedicated Microsoft Teams workspace and QUANTUM project’s helpdesk, ensuring that input could be captured both during and between sessions and fed back into the project’s technical and policy work.</span></p>
<p><span class="fontstyle0">The deliverable documents the forums’ objectives, membership, methods and main discussion themes, and analyses how stakeholder contributions influenced the evolution of QUANTUM’s labelling specification, maturity model, piloting approach and F4P concept, as well as their positioning within the wider EHDS and HealthData@EU implementation pathway. In doing so, it provides evidence that structured, iterative stakeholder engagement can enhance the clarity, usability and legitimacy of data quality and utility frameworks intended for EU</span><span class="fontstyle2">‑</span><span class="fontstyle0">wide adoption, while also surfacing critical issues such as burden on less mature data holders, granularity of quality information and the design of meaningful user</span><span class="fontstyle2">‑</span><span class="fontstyle0">driven fit</span><span class="fontstyle2">‑</span><span class="fontstyle0">for</span><span class="fontstyle2">‑</span><span class="fontstyle0">purpose assessment model.</span> </p>