We want to understand cancer and cure it. To do this we not only need the best scientific minds doing the very best research, but we need to find ways improve the way that research is carried out and remove barriers that are slowing down our progress.
Earlier this year our chief clinician Peter Johnson gave evidence to a group of MPs with expertise on research issues, called the Science and Technology Committee, on the problems faced by people running trials in the UK.
Last week the Committee published its report on clinical trials in the UK.
The MPs report makes several recommendations on how to improve clinical trials for both the people running them and patients participating in them. These included removing regulatory hurdles to setting up studies, getting the useful information to patients and ensuring that the information generated from trials is widely shared, not withheld.
The report stresses that every effort should be made to give patients the opportunity to take part in clinical research. But to do this patients first need to know about trials that are relevant to them and, ideally, close by.
We were particularly pleased that our clinical trials database, CancerHelp UK, was held up as an example of how to share clear and useful clinical trial information. Our team of expert nurses have mastered the art of taking complex scientific information and making it digestible to cancer patients looking for information and opportunities to take part in trials.
The database lists nearly 1,700 trials and gets over 35,000 page views a month. It’s clear from the report that the committee wants databases for other diseases to match the information standard produced by CancerHelp UK.
Clarity on transparency
One hot topic during the evidence sessions was how to achieve the goal of greater transparency through the clinical trials regulation. Transparency is a crucially important issue. It means that every finding from a trial is made available to other researchers and that knowledge contributes to our overall understanding of a disease.
We need to know for example if a trial shows that a treatment is harmful or ineffective.
Recent research and campaigns such as All Trials have highlighted the problems of some trials not being published. The committee took evidence demonstrating the extent of the problem and proposed measures such as making researchers publish the summary of their results within a year of the trials end, a measure that is included in the new legislation that governs the operation of clinical trials in Europe.
We’re pleased that the Committee has listened carefully to the research community about the best ways to achieve trials transparency.
The organisation that oversees the approval of research studies in the UK – the Health Research Authority – has recently announced that all trials must be registered by the time they start recruiting patients in order to get ethical approval. This means that we will know about every trial taking place in the UK and therefore can keep tabs to make sure the results are reported.
More needs to be done to improve access to clinical trial data, and we’re looking at models that will work for our research staff.
Breaking down barriers
Finally, the committee looked at some of the major barriers to running trials in the UK. All of the issues discussed in report are concerns that we’ve been raising for some time now.
For example, we’re pleased to see the committee acknowledge the problems with European legislation that led to trials being harder and more bureaucratic to run in Europe, and so call for a more flexible approach to running trials.
The Health Research Authority has led the way in tackling the barriers to clinical trials and we eagerly anticipate their proposals for faster set up times. So overall we support the messages and proposed solutions in the MPs report. It’s been a useful exercise in taking stock of how far we have come and the opportunities that lie ahead.
We’re looking forward to seeing the Government’s response to see how they will go about implementing the recommendations from the Committee. In the meantime we’ll continue to look at ways to make trials as straightforward to run as possible.
Images courtesy of Wikimedia Commons.