In our December 2025 newsletter, we wrote about the creation of our PaLaDIn Patient and Caregiver User Group (PCUG). Since beginning their activities this January, our PCUG members have played a crucial role in co-creating not only the Interactium® but other key outputs that are being developed in PaLaDIn, providing important patient and caregiver perspectives and offering regular feedback through a variety of channels.
Regarding the Interactium® specifically, PCUG members have made significant contributions to the Discovery phase, including participation in online workshops, review of wireframes – blueprints of what the Interactium® will ultimately look like – and provision of feedback grounded in lived experience. This input has been instrumental in supporting the development of the Interactium® as a user-centred platform and will help ensure it is meaningful, engaging and easy-to-use for patients and caregivers.
PCUG members have also engaged with industry representatives from the Interactium® Futures Board, contributing to discussions on potential use cases and future applications of the Interactium® beyond the PaLaDIn project. In May, we also held a social media workshop with our PCUG members, from which we gained valuable insights that will help us as we look to launch a new social media channel dedicated to engaging with patient and caregiver communities.
PCUG members have continued to play an active role elsewhere in the PaLaDIn project, too, including participation in the recent Rare Disease Clinical Trial Recruitment Dataset Workshop. Through surveys and workshops focused on topics such as data and device usage, members have also provided valuable insights into the day-to-day experiences, routines, and challenges faced by patients and caregivers, helping to inform project development.
Beyond their direct contributions to project activities, PCUG members have also been raising awareness of PaLaDIn and their involvement in the development of the Interactium® through their personal and professional networks. One member recently contributed an article to the Duchenne Family Support Group, highlighting their role within the project. Other members have attended conferences and neuromuscular disease (NMD) events across Europe, where they have shared their experiences and discussed the impact of patient and caregiver involvement in PaLaDIn.
Speaking about their experience in the PCUG, one member said “this is the first time I’ve really experienced this level of co-production, involving patients and users at this kind of level. I appreciate what PaLaDIn is trying to do, because it is still the norm in other areas for a finished product to be provided to a patient group, and that is often what they see as consulting with patients and carers. So, I give credit to everyone involved in the PaLaDIn project for involving us early in the development stages”.
We would like to thank our PCUG members for their time and expertise.
