Almost every improvement in the treatment of blood cancers in the UK involves testing new drugs and other agents as part of a clinical trial. Trials prove that new drugs are safe to use, deliver benefits for patients and are better than the existing standard of care. In the UK, we have a strong reputation for clinical trials; across the various forms of leukaemia, myeloma and related diseases there are more than 50 different trials currently open and almost 3 of every 10 patients take part in a clinical trial.
In recent years, the active involvement of patient representatives has helped to improve clinical trials at all stages from identifying topics and prioritising trial applications through to trial design, recruiting patient and the preparation and dissemination of trial results. I am a patient representative myself on the Haematology Oncology Clinical Studies Group which oversees the development and delivery of all UK- based clinical trials in acute and chronic leukaemia, myeloma, MDS and MPD/MPN and we're currently looking to recruit a new patient representative for acute myeloid leukaemia.
The AML clinical trials group is a very active one working hard to identify and prove new and improved treatments. As a patient representative you'll have the opportunity to attend meetings, contribute to discussions with doctors and researchers, talk to patients, help to write patient information leaflets and prepare trial "lay summaries" which will make an enormous difference to both existing and future clinical trials which ultimately will help to save more lives faster and continue to improve the quality of life of blood cancer patients.
Don't worry either if you don't consider yourself a walking authority on everything to do with AML. No one will expect you to know or understand everything that’s discussed in a Clinical Studies meeting so you don't need to be a walking authority on everything to do with AML. In fact, one important benefit of patient representation is to ensure that patients and patient benefit remain firmly at the centre of things, however complex the scientific or medical issues involved.
The two key centres for AML are in Cardiff and Nottingham so it would be an advantage if the representative lived near one of these cities. However, much of the role can be done via email so it is not essential.
If you're interested in becoming a patient representative or would like to help out in any way please email me directly at john.reeve22@@btinternet.com