Together, with a look to the future

May 13, 2026 | News

Here we are at the closing event of FACILITATE. On June 4–5, 2026, the Fondazione Collegio San Carlo in Modena will host the final conference of FACILITATE – “LOOKING TO THE FUTURE” From Project to Practice:
Operationalizing Reciprocity, Participant-Centered Clinical Research Systems, Data Return, and Responsible Data Reuse. Stakeholders from policy, regulation, industry, patient organizations, ethics, infrastructures, and digital health will reflect on how Return of Individual Participant Data (RoIPD) by design and responsible data reuse can become embedded within future participant-centered clinical research systems.

The first day of work begins with a few reflections on FACILITATE within the evolving European clinical research landscape. The purpose is to frame the conference as a forward-looking strategic discussion extending beyond the lifetime of the project.
Johanna Blom and Nadir Ammour, coordinators of the FACILITATE project, will provide an overview of the conceptual foundations, evolution, and major outcomes of FACILITATE with the aim to establish RoIPD by design as a systems-level approach to participant-centered clinical research and introduce the major themes of the conference.

Next will be the insights sessions. In the first, Stakeholder Perspectives on the Secondary Use of Clinical Trial Data in Europe (Delphi Study) moderated by Nicolas Thurin (U-Bordeaux), the discussion will take place on FACILITATE Delphi findings and the governance challenges surrounding the responsible
secondary use of clinical trial data in Europe.
The goal is to explore how trust, interoperability, and data governance frameworks can support responsible reuse while protecting participant interests.

Next, in Plenary session 1 From Trust to Trustworthiness in Clinical Research:
Why returning data is a system issue, not a courtesy Sylvia Baedorf Kassis of MRCT will explore the ethical, societal, and institutional foundations of returning individual clinical trial results, moving the discussion beyond goodwill and individual discretion. The question is not whether participants receive information today, but whether research systems are explicitly designed to support this obligation reliably, equitably, and sustainably.
Trustworthiness requires shared expectations, clear roles, and system-level support – not reliance on individual effort alone.


The first day closes with the thematic panel Returning Results in Practice:
Patients, Trials, and Systems. From data return to durable participant relationship moderated by Cris Woolston (Sanofi). This panel will feature short interventions and discussion exploring returning results across different contexts, populations, and trial types. Meaningful return of results depends on context: participant needs, health literacy, trial design, and available resources. For screen fail patients, it provides a direct benefit making it easier to match to alternative studies.

The second day the conference begins with another in-depth session. What FACILITATE Delivered – and What Is Ready to Use. It will be a structured walkthrough of FACILITATE’s key outputs, focusing on how existing return-of-results practices can be intentionally embedded into trial design, governance, and operations. Key message of the session is that FACILITATE does not introduce a new obligation. It provides a framework that is flexible makes RoIPD visible, intentional, and supportable. It complements MRCT and TCB outputs and tune it to Europe. The outputs translate ethical intent into operational design elements that sponsors, investigators, CROs, and infrastructures can adopt progressively.

Next up is Plenary session 2 Scaling RoIPD by Design in Europe and Beyond. Embedding RoIPD into European Digital Health Vision chaired by Jacques Delors (ECRIN), where guests are invited to discuss practical implementation pathways for scaling participant-centered research systems across Europe and internationally. The purpose is to examine how infrastructures, industry, and governance frameworks can support sustainable adoption of RoIPD by design.


We will then move on to the strategic panel From Innovation to Implementation: Aligning Policy, Practice, Incentives, and Investment where prestigious guests from various institutions will engage in high-level strategic discussions on the future adoption of participant-centered clinical research systems in Europe. The goal is to identify the policy, infrastructure, governance, and investment conditions required for sustainable implementation and uptake.

The conference ends with a closing synthesis of the conference discussions and articulation of future priorities: FACILITATE Calls to Action: From Project to European and Global Uptake led by Johanna Blom and Nadir Ammour. The aim is to consolidate FACILITATE’s recommendations and define a shared vision for the future of participant-centered clinical research systems.

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