John Reeve
Posted by

Help make clinical trials better

John Reeve
Posted by
02 Oct 2014

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



What a fantastic initiative, John!

I'd absolutely love to help out with this in any way I can. Do they need help at all for CML?


Hi Andy, thanks very much for your comment. YES, we are always on the look-out for new patient representatives. Could you tell me a little it about your story and background via email -


In an effort to help spread your message about the importance of clinical trials participation, I would like to offer suggestions for complete and balanced information including searches, process, protection, benefits and risks. Here are some helpful resources (websites and book):

1) (Center for Information and Study on Clinical Research Participation)
This non-profit organization is focused on educating and informing the public about clinical research participation. CISCRP also provides valuable information including how volunteers can protect themselves.

CISCRP can help patients locate ongoing clinical trials by conducting a custom search for them with

2) The book: The Gift of Participation: A Guide to Making Informed Decisions About Volunteering for a Clinical Trial (author: Kenneth Getz) - available on the CISCRP website.

3) And for specific trial listings and news about Clinical Trials, your readers should go to the website: There, they can search for clinical trials in their area or around the world, and they will find listings of clinical trials organized by medical condition, therapeutic area and location.

My goal is to help people feel empowered and protected as they participate in the Clinical Trials process. I hope you find these suggestions helpful.

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