you-can-solve-rubiks-cubeA short while ago, I heard an American patient advocate say, ‘I can’t solve your problem for you, but we might!’ A few short words that make clear what’s important about cooperation. Cooperation – so often preached but so seldom practised. Cooperation means you hand over what is dearest to you, so that others may live better lives. Cooperation comes from unselfishness.

I believe that cooperation between patients, doctors and scientists will solve the problem of cancer. And my conviction grows daily when I sit down with doctors and scientists to talk about research and implementation. The contributions made by these three groups are all of great and equal importance. Research is simply too important to be left to the scientists. Not that scientists don’t perform high-quality research. Yet their work will not always benefit the patients. The question that I keep raising is, ‘What’s in it for us patients?’ I can already hear some of those engaged in fundamental research say, ‘That’s not always what research is about.’ And I say, true, there is research where it’s impossible to tell right off what’s in it for anyone, but which still has to be done in the hope of achieving some breakthrough. Highly relevant. However, this is not the kind of research our organisations sponsor. There are other sources for that. Research that we fund has to benefit patients. And to achieve this, all three interest groups, patients, doctors and scientists, have to sit down together and set a joint research agenda. Which research project makes the most valuable contribution to solving the cancer problem? Which cancers should be given priority over others? Pancreatic cancer is a type that receives little funding, although all 2,500 patients diagnosed with it every year will die. That certainly is a high mortality rate, and so the need for research in this area is urgent.

Another example is colon cancer screening. From next year, population screening will begin, involve some 100,000 colonoscopies in 2013 alone. That’s simply too big for us. In a higly inspiring dialogue with doctors and scientists we are currently trying to find out if there isn’t a better screening method where colonoscopies can be limited to people who are strongly suspected of having colon cancer. They make up only six percent of the current number of colonoscopies. It would save patients a heck of a lot of trouble – and it would save a lot of money, too.

Now that is the kind of research that comes from constructive dialogue between patients, doctors and scientists – in that particular order. Patients are good at pinpointing needs. They don’t need years of costly research to know that they want. Doctors can then place the patients’ needs in the right perspective: what are the backgrounds, why these particular complaints, symptoms etc.? And scientists are good at finding solutions. With lots of creativity and, of course, even more stamina. Is it easy? No, of course not. If it was, the solutions would already have been found. Can it be done? Most certainly! Cycling up a mountain six times in one day can also be done, and aggressive cancer treatment can be endured. We know it’s hard. We also know the reward will be tremendous: The deep satisfaction of looking into a cured patient’s eyes and seeing her with her loved ones, all alive and radiant with happiness.

Patients first! Patients make the difference!


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