Clinnova Rheumatic Diseases to a Co-Created Research Submission Template

At Clinnova, we focus on patient-centricity and build it into the foundation of research. Between September 2024 and December 2025, a dedicated co-creation process at the Luxembourg Institute of Health (LIH) brought together 14 patient and citizen partners, together with Laetitia Garcia (Clinical Research Coordinator), Laurent Prévotat (Data Protection Officer), and Sandrine Lavallé (PPI Manager). Together, they revisited core study documents from the Clinnova Rheumatic Diseases (RD) use case, including informed consent forms, data protection notices, and statements on secondary data use.

The goal was clear: make complex research documentation truly understandable, without compromising scientific, ethical, or regulatory integrity. Through a series of 10 in-depth workshops covering topics such as artificial intelligence, genetic testing, and secondary data use, the group transformed technical content into clear, accessible, and meaningful information. A key insight emerged: what researchers consider essential is not always what patients need to feel informed and confident. Bridging this gap became central to the process.

As echoed by the patient partners involved:

We now have documents that truly reflect both patient and researcher perspectives. They are clear in lay language yet without losing important details. This project shows how multidisciplinary collaboration can be real game changer. – Ingrid, patient partner

Being part of these workshops was motivating, knowing it could be help others engage more with clinical research. The documents are much clearer now and aim to make the reader feel involved. It’s also important that data use is explained in a simple, understandable way, not in scientific or legal language. – Katia, patient partner

I initially thought it would just be a quick grammar review, but I was impressed by how engaged everyone was in improving the documents. Working with the team helped us make them clearer, simpler, and still compliant. They’re now much more readable for patients, which helps them better understand how their data is used. – Kathy, patient partner

This collaboration led to the development of a reusable research submission template designed to:

1. Provide a structured, intuitive framework for researchers
2. Ensure consistency and quality across submissions
3. Embed patient perspectives from the outset

The template was tested by researchers at LIH, receiving unanimous positive feedback. It was then presented by patient partners themselves to the National Research Ethics Committee (CNER), which welcomed the initiative and expressed interest in its broader adoption. This work reflects a shift in how research is designed and communicated. By integrating patients as equal partners, Clinnova ensures that essential information, particularly around consent and data use, is not only compliant but also clear, relevant, and trusted.

In total, 10 workshops were conducted, including one involving members of the national Ethics Committee, highlighting the strength of cross-stakeholder alignment.

The resulting template now serves as an internal standard at LIH and has the potential to inform research practices across Luxembourg and beyond, setting a new benchmark for how patient-centered research is designed, understood, and trusted.