Approximately 200 billion euros is spent on cancer research worldwide each year. This statistic could no doubt be slightly qualified; it may be higher, it may be lower. However, the point is that it’s a lot of money and the results are less than wonderful – at least, if you look at it from the patient’s point of view. But not if you simply see research as a job of work and a way of earning money. Then the result is completely satisfactory and you are bound to want to ask for more.

At the Inspire2Live Annual Congress 2015, it was painfully obvious that we aren’t getting it right. Sabine Tejpar gave a fabulous presentation (which you can see on our website; www.inspire2live.org) in which she revealed that not a single trial for colon cancer, for example, truly benefits the patient. Which isn’t surprising, since they are all based on a generic form of colon cancer, whereas we now know that there are at least 5 different types of colon cancer, all of them determined by genetic mutations. Worse still, some of these trials are actually harmful to the patient. Another appalling statistic, according to Sabine, is that we’re not even learning from these experiences; we’re simply carrying on along a route that has already been proved not to work.

Another poignant example is the development of drugs to treat pancreatic cancer. This has gradually become something of a hobby-horse with me. Patients with pancreatic cancer generally have a life expectancy of between 6 and 12 months. In that time, we give them chemotherapy which makes them nauseous and weak. At best, this only gives them an extra 3 to 4 weeks of life: a pretty mediocre outcome which we should stop right now. After all, what’s the one thing most pancreatic cancer sufferers are wrestling with? The answer is ‘pain’. ‘If I can take away the pain, Peter, we give them 6 to 12 months more to live,’ Dave Tuveson has told me. And that’s how it is. Yet nobody is studying how to do it, because there are no patents to be taken out for pain relief. Yet as any patient advocate will tell you, the best thing you can do for a patient is to help them fight pain. Once we’ve got that sorted, we can refocus our attention on the drugs that might help people to live longer while upholding quality of life. By at least a year, not just a few weeks. The medication currently being administered to these patients should be stopped immediately, since they are reducing that quality of life.

So more money isn’t the solution to the problem of cancer. If you simply throw more money at it, all that will happen is that we’ll get more research of the kind that’s already being done, which will yield the same results as before: namely ‘nothing, apart from one or two exceptions.’ What will deliver a real solution is including patient advocates in the decision-making process. First, in deciding what to study, and second, in deciding how to set up the resulting trials.

This is because patient advocates always put the patient first and always ask questions like: ‘Is this in the best interests of the patient?’ ‘How do you expect this research to benefit the patient?’ ‘How many years of extra life will this medication give the patient?’ They’ll also ask other questions, such as: ‘Why don’t we develop a medicine specifically for children, or for people with brain tumours?’ Or even perhaps: ‘This medication doesn’t make much difference to the disease but makes the patient feel very sick. Why don’t we abandon it, go back to the drawing board and try to develop one with minimal side-effects?’ ‘Is medication really the best treatment for these patients, or would interventional oncology be better?’

These are just some of the dozens of questions that could be asked, yet never are. Never, because they are difficult and uncomfortable questions to which we would rather not give – or hear – the answers. After all, there is not a dollar to be made on developing drugs for children or people with brain tumours. Research apparently has to lead to patents rather than pain relief.

Yet if cancer research is to become more effective and (presumably also) more efficient, then it is patient advocates who must set the agenda. If medical trials really are to deliver any added value to patients, then patient advocates must be involved in their design and must be on hand to ask the right questions. If they aren’t, then the 200 billion euros we currently spend on research will simply get bigger and create yet more jobs. Which may be good news for some people, but not for patients.