We’re excited to share that we are in the early stages of setting up a Patient and Caregiver User Group. The group will ensure patients and caregivers within the neuromuscular disease community are regularly involved and have a voice in the PaLaDIn project and development of the Interactium®.
The PaLaDIn project will develop and implement the Interactium® – an innovative, secure, accessible, user friendly and high-quality data collection platform. This will aim to accelerate the development of effective treatments and patient care, enhance health-care decision making and improve patient outcomes. The Patient and Caregiver User Group will bring together individuals who are passionate about improving care for those with neuromuscular diseases to help us to develop the Interactium®. Patients and caregivers provide unique experience-based perspectives that help identify what is most important, thereby contributing significant value to the development of the project. The goal of the group will be to provide regular, valuable input at key stages of the project; this could involve sharing input and feedback on different aspects including educational resources and providing user experience feedback on design, prototype and build of the Interactium®.
Recently, a Consortium workshop was arranged to identify the key requirements for the Patient and Caregiver User Group, including how often and when their valuable input will be required. TREAT-NMD will be leading on assembling the User Group and look forward to beginning the process.
We will continue to share updates as the group develops with the progression of the PaLaDIn project.
