For patients who are thinking about being in a clinical trial, I would like to tell them that their participation is an important way we improve our health care. Knowing what works and what doesn’t is fundamental to the evidence base that underpins medicine. Without it, we are just snake oil salesmen.
And it’s important to realise that everyone benefits from clinical trials. Every clinical trials patient has been the beneficiary of previous medical advances brought about by clinical research. There is a circle of benefit that comes back to people.
If people want medical advances, and most importantly, want them to happen faster, then they are the major contributors who can make this happen. Hastening the speed at which advances happen needs more human beings to take part in research. There are often calls for the public to support research through donations, but research needs people as well as dollars.
People hear of a miracle cure on the radio, and then say, ‘Oh no, they say it will be ten years before it’s available.’ If those people enrolled in a trial, we could make it five years instead.
We have actually seen this in kids with cancer. Following a push to get children into cancer trials, enrolling kids in a trial is now the norm rather than the exception. In part because of this, we have seen the cure rates for kids’ cancer go from less than 10 per cent to more than 80 per cent in a short period of time. Participation hugely accelerated the pace of advancement.
I have seen how clinical trials can change our health care, and how they help people. Many drugs for breast and bowel cancer that were trialled less than five years ago are now in routine care and we see patients benefit from these every day. Recent trials for new melanoma drugs have also had remarkable results.
In a very rewarding clinical research study, we had one patient who had cancer with an unknown cause. From their blood samples we discovered a new cancer predisposition syndrome, and were able to test for this in other members of the family. This research was published internationally and has gone on to help other families.
There is data that shows that people in clinical trials do better than others with the same disease or condition. This may be because they are more closely monitored or stick exactly to treatment guidelines. It can also be because they have access to treatments that are not yet available. Many patients value the additional interaction with a range of medical professionals. It gives them more opportunities to ask questions and more people to talk to about their condition. There is also data to show that hospitals that take part in clinical trials provide better care to all their patients, probably because more attention is paid to treatment and standards and there is continuous feedback given to clinicians’ performance.
Sometimes tests in clinical research are time consuming, and can therefore be a bit of a hassle for patients. But almost every patient who starts a clinical trial decides to stay, and sees an overall benefit from taking part despite any ups and downs.
I always discuss with prospective participants before a trial that they won’t necessarily benefit from the trial. People accept this and say, ‘Even if it doesn’t help me, it will help others.