I first wrote about the importance of open clinical trials two years ago. More recently, I urged people to contact their MEPs for a crucial vote that was taking place in one of the committees in the European Parliament. The AllTrials site, which is coordinating the fight to obtain access to this vital public health information, now asks for help during another stage in the battle for open data:
Thanks to the letters you sent to MEPs last May some very good additions were made to the draft Regulation. These new parts of the law would mean that all clinical trials taking place in Europe would have to be registered and summary results published within a year of its ending. We need to make sure that these additions make it into the final law, and we don't have much time as the next stage of the process starts in the first week of November.
The next stage is a series of ‘trilogue' discussions between the European Parliament, Commission and Council. We understand that the European Council hasn't decided its position yet. The Council is made up of representatives of all of the individual Governments of European countries so your Government's position is very important. There's no time to lose – please write to your health minister this week and urge them to support the good additions to the Clinical Trials Regulation.
I am writing to urge you and the UK Government to support amendments to the European regulation on clinical trials that would mean more of the findings from clinical trials done on Europe will be available to researchers, doctors and pharmacists. Only around 50% of all clinical trials are published – this means that doctors and researchers do not know what was found in them, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated. All clinical trials should be registered and the results reported.
The specific amendments I am asking you to support are:
Amendment 191 which would ensure that clinical trials are registered before they commence.
Amendment 30 and amendment 250 which say that data in clinical trial reports should not be considered commercially confidential. These amendments would ensure that commercial considerations don't override the interest in public health research.
Amendment 193 and 253 which would ensure that if a detailed clinical study report is produced about a clinical trial, it should be made publicly available.
As usual, it's quite important to write your own letter, rather than cutting and pasting from the above. We know from past experience that politicians tend to treat thousands of copies of the same message as just one communication. So far better to write something very short, but personal.
This is a crucial fight, because it represents the release of clinical trials results as open data at a European level, which sets an important precedent there, and concerns an area where having the right information is literally a matter of life and death. That makes it doubly worthwhile taking five minutes to drop a note to Mr Hunt...