Patient and Stakeholder Engagement (PSE) refers to the active involvement of patients and other relevant stakeholders from the very beginning and throughout the entire process of the National Strategy for Gene- and Cell-Based Therapies (National Strategy GCT). This includes integrating their perspectives and needs as individuals with lived experience. This approach ensures that projects and measures are designed in a patient-centered way.
Patients and patient organizations are represented in many working groups of the National Strategy GCT. One example is the close collaboration within a subgroup of Topic 8 "Interaction with Society." This group is currently developing patient-centered information on gene- and cell-based therapies, which will be published on this website. The aim is to provide evidence-based and specific information on gene and cell-based therapies and their dynamic developments to interested individuals, particularly patients as well as patient and self-help organizations.
The first step is collecting, professionally reviewing, and referencing existing information sources. Patient representatives' involvement and an additional survey of the target group will ensure the content meets their needs.
More information about PSE in the National Strategy GCT is available here.
The project "Patient and Stakeholder Engagement (PSE) in the National Strategy for Gene- and Cell-Based Therapies" is a joint initiative of the National Network Office GCT Germany and the PSE Team at the BIH QUEST Center.