Milestone for IDERHA: The Patient Advisory Board is installed

The ultimate goal of IDERHA is to improve patient care and medical research for lung cancer patients. Including the patient perspective in the project is key to achieve success and ensure optimal adoption of IDERHAs technological solutions and policy recommendations. Therefore, IDERHA formed a Patient Advisory Board (PAB), maximizing patient involvement in the project. The PAB is installed by our partners The European Patients’ Forum (EPF) and Lung Cancer Europe (LuCE) and consists of individuals from outside the consortium. 

The PAB comprises eight members representing various countries and disease areas, including diabetes, lung cancer, rheumatic diseases, spina bifida, and myeloma. Their backgrounds and experiences contribute to a diverse and comprehensive understanding of patient needs and priorities. All PAB members have been active members of patient organizations for several years, and they have also participated in various European projects. 

The primary role of the PAB is to provide a patient/user-centric perspective in monitoring and reviewing activities within the IDERHA project. The PAB will play a pivotal advisory role across the project activities and contribute to the dissemination and communication efforts to their respective communities. As one of three advisory boards within IDERHA, the PAB provides an invaluable patient perspective throughout the project’s lifecycle. 

Given IDERHA’s focus on establishing a platform for integrating diverse human health data along the patient journey with lung cancer, the PAB ensures that patient needs and perspectives are thoroughly considered, making the project genuinely patient-oriented. By incorporating patient viewpoints, the project can better understand patient needs, values, and obstacles, thus ensuring that the solutions developed are beneficial and relevant to patients. 

To achieve this, the PAB will be asked to provide input to inform policy priorities, engage in stakeholder meetings, monitor project progress, offer feedback on the patient journey, and attend project meetings. The feedback of the PAB will be incorporated into decision-making processes through various mechanisms and will thereby ensure the patient experience is integrated into the work of IDERHA.