Patient Voice OLD

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The involvement of patients’ voice is essential to the success of our objectives:

Digestive Cancers Europe (DiCE) and Lung Cancer Europe (LuCE) are partners of the GUIDE.MRD Project. DiCE and LuCE will have a strategic role in ensuring the robust contribution of patient perspectives through their existing networks.

In addition, the patient interest organisations and patient advocacy groups in the patient recruiting countries will be invited to participate in the GUIDE.MRD Patient Advisory Board (PAB). Further, we aim to involve the PAB in formulating the trial, in the patient communication strategy, the patient information material, and setting-up the patient related trial logistics.

The PAB with DiCE and LuCE, representing EU patient organizations, people with cancer and caregivers across lung, colorectal and pancreatic cancers, will play a crucial role to understand patients’ needs and experiences along the care pathway, and particularly post-surgery and prior to relapse also using existing tools to define needs and experiences can be deployed, including the From Testing to Targeted Treatments (FT3) Program’s Access Barrier Cause-Effect Canvas and Patient Stories visualizations.

The Patient Advisory Board individual organizations, individuals and caregivers will be engaged across the entire process of research & development to ensure individual engagement in project research and outcomes are patient-centered, for example, relevant individual outcomes (WP2-3), precision oncology diagnostics (WP2), understanding, interpreting and acting on test reports for decision-making (WP2), patient-friendly trial design (WP3), relevant individual experience data on testing and muti-modal therapies in the care pathway (WP3), plain language materials (WP2-5), patient-centered data governance models (WP4), dissemination & communication channels (WP5), highlight patients’s needs and their pathway expectations, and align with project activities (WP6) etc.

This project is supported by the Innovative Health Initiative Joint Undertaking (JU) under grant agreement No 101112066.
The JU receives support from the European Union’s Horizon Europe research and innovation programme and EFPIA (including Vaccines Europe), MedTech Europe and LGC Clinical Diagnostics INC.
Funded by the European Union, the private members, and those contributing partners of the IHI JU. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the aforementioned parties. Neither of the aforementioned parties can be held responsible for them.