How can I find possible clinical trials?
Why isn't there a better system for letting GPs know what trial options are available to patients?
Professor Johann De Bono, Institute of Cancer Research, London and Director, London Movember Centre of Excellence:
This is a really key question. First of all, I should say that all clinical trials are registered on the Clinical Trials website, and most are also listed on the Cancer Help website. Clinical trials can often be the way to get the gold standard treatment, and maybe even the future gold standard treatment. I would encourage patients to really find out what trials are available. We have recently shown that patients with advanced prostate cancer having access to trials and the best new drugs through trials actually live longer than expected. So this is important. And also, without trials we really cannot make progress. However, the websites that we have are frequently not entirely up to date, because the field is moving forward so rapidly. But I would certainly encourage each patient to ask their GP or their consultant what trials they can access. If you live near a prostate cancer Centre of Excellence – or hospital with expertise in prostate cancer, these trials may even be available locally. If there are no trials available locally, patients should also not be afraid to ask for a referral to another hospital that they'd be willing to travel to.
However, it is important to be aware that trials do involve major commitment, and frequently more travel to the hospital than normal. I certainly believe that this is the only way forward to improve care for our patients, but it is important that patients think very carefully about what these trials will mean to their lifestyle. Clearly, time is precious, and trials often require increased time commitment for hospital visits - more tests, more scans, more careful involvement of the doctor and the patient in the trial. So it's really key that the patient considers the impact this will have before they commit to participating in a trial. Certainly our goal for each patient is to maximise benefit and minimise risk. And that's a really key consideration.
Professor Malcolm Mason, Cardiff University:
I think patients do find it frustrating that if they're interested in a clinical trial their GP may not know what's available. And partly that may be because GPs don't have time to go and have a look on the internet; and of course all this information is there. One of the frustrating things is that there's quite a variation across the UK in terms of which trials are available in which centre. There are some trials which are very widely available, but others where the participation is patchy. That can be for very good reasons, because local resources differ greatly. But that all makes it a real challenge. I think it really comes down to the local communication between the secondary care system (hospital care), the tertiary care system (community care), and primary care (GPs and practice nurses). And that's one of the things that surely we must be able to address in terms of the IT infrastructure in the NHS. We have too many systems that just don't talk to each other readily enough, and I think some attention needs to be given to that.
Read more about taking part in a clinical trial.