DIALOGUE WITH STAKEHOLDERS - Dialogue with stakeholders
Medical Perspective - Didier Jacqmin
More patients needed for clinical trials, says top urologist
Didier Jacqmin, of the European Association of Urology (EAU), is a professor of urology based in the European Parliament-city of Strasbourg, France.
The EAU’s stated mission is to raise the level of urological care throughout Europe and beyond. It’s the leading authority within Europe on urological practice, research and education and represents more than 16,000 medical professionals who together strive to create forward-looking solutions for continuous improvement, professional growth and knowledge sharing.
According to Didier, urology can gain a lot from the brave new world of personalised medicine (PM). Biomarkers can identify, say, family members who may get tumours somewhere down the line and this allows for very early action. The practical upshot of this is that it can avoid later interventions and, effectively, reduce the number of patients needing more extreme treatment at a later stage.
But the professor acknowledges that two major challenges with PM involve getting patients to clinical trials and the cost of producing drugs that work for sub-groups. Once genetic profiles have been selected the trials that are then held are by definition smaller. Getting patients involved is already an issue with bigger trials.
‘There is a fear of trials among some patients,’ says Didier, ‘and also a lack of awareness that they are taking place. We need to get patients more involved, better informed, and advertise these trials to the public. Even a lot of GPs don’t know that trials are ongoing and, of those that do know, sadly some of them don’t seem to care.’
The next issue is getting a drug that works for a sub-group onto the market. Says Didier: ‘It’s difficult for companies because it’s costly in terms of R and D. One way to soften the blow is to give the pharma companies longer exclusivity with a new, sub-group-targeted product to allow them to get their money back.’
These are major issues but there’s another large one that many in the frontline of the discipline (and certainly EAU members) are tackling head on: PM also involves working hard on interacting with patients, educating them and, crucially, listening to them.
Says Didier: ‘It‘s not only about understanding and using the science. PM is also about adapting to the patient in front of you. He or she may have several options – such as surveillance, surgery, radiotherapy etcetera – and we have to take into account the patient’s choices. We are not in the patient’s place and do not know his or her lifestyle, family circumstances and so on. It’s important to listen and we always send them home with plenty of advice and written information that will help them make the right choice for their unique circumstances.’
He adds: ‘We should have continuous medical education for clinicians who, in turn, can pass the knowledge onto the patient. At the moment this is not well organised. Quite often it is the companies that train us but, at least in France, the government considers this to be a conflict of interest. There is so much resistance to change.’
‘But the fact is;’ insists Didier, ‘that a well-informed patient is happier and has a better quality of life’.
Didier Jacqmin was talking to Brussels-based freelance journalist Tony MallettAuthor: Tony Mallett