The value of clinical research is to improve treatment outcomes for patients and to inform health policy. However, the knowledge gained from research only translates into impact for patients when new therapies become used as part of routine practice. Advanced therapy medicinal products (ATMPs) are promising new medicines which use genes, tissues or cells as treatments, often for rare diseases. The clinical research facility provides the supports to test these new medicines to see if they are safe and effective. This award is about mapping what knowledge users (patients and their doctors) need to know to take ATMPs from research into practice by; Looking at how previous ATMP therapies (haemophilia and spinal muscular atrophy) have moved through the research journey
Using this knowledge to design a Knowledge Map, suitable for ATMP clinical trials at St James’s Hospital
Designing a method to advertise and promote the new Map to increase knowledge and participation of healthcare professionals and patients in ATMP research
Healthcare professionals and patients who have been involved with ATMP therapies will take part in this project. The learning (what went well and what did not) gained from studying the transfer of these therapies from research to practice will help to design the Knowledge Map. Patients and/or their families will have input as key knowledge users. The success of this project will be measured in several ways:
Successful design and uptake of the Knowledge Map
Feedback from participants on their understanding and inclusion Feedback from other researchers on the quality of the project methods
Increase in the number of enquiries from healthcare professionals and patients about running and taking part in ATMP clinical trials
Staff survey to measure the research culture and awareness at St James’s Hospital
Increase in the number of ATMP clinical trials at St James’s Hospital
