My presentation was about the p-medicine project which is a funded project by the European Commission in Framework Packet 7. It’s a large integrated project that is a project coming to the way how we can give personalised medicine to patients. It’s a project that is interfering between different stakeholders in this area and it’s not only clinicians, it’s also IT people, legal people, ethicists and many others like bioinformaticians, molecular biologists. We try to bring all data of patients together under a legal framework, an ethical framework, to bring new knowledge into cancer. We are looking for three different cancer types: this is breast cancer, this is acute lymphoblastic leukaemia in children and this is nephroblastoma which is the most common cancer in the kidney of children. The main message from my presentation is that we can only go further to personalised medicine if we bring all these data together that will be developed here in the course of a patient. The problem is, on one hand, the privacy of the data and how to deal with that that we really can join it. Therefore we have a legal framework to help guarantee the patients that their data are secure and safe.
On the other hand we do need a very much integrating platform on the IT side because if we have not a possibility from IT technology to bring these data together we will not gain new knowledge out of the data. So to build up the IT infrastructure is one of the most important issues of p-medicine and this is a real challenge.
What is the significance towards clinical practice?
In the long run it will benefit patients in a way that I believe that we can give better treatments to patients. I may make an example: I know about a small child of six months of age having in both kidneys a nephroblastomatosis. This child did respond to chemotherapy primarily and later it did relapse. Then the question was to take both kidneys out. Going into the molecular biology of the child we did find that there was indeed disruption of the retinoic acid pathway, which is a metabolic pathway in the tumour cells, and that metabolic pathway could be addressed by a targeted therapy. Giving the child a targeted therapy the tumour did shrink in both kidneys. To date the child is healthy, having two normal kidneys functioning and that’s what we want to do in all of the patients, to give them another kind of treatment, less side effects, better outcome.
What are the main obstacles?
To sustain this project will run for four years altogether and it will be ending next year. All the things we have built up in p-medicine should sustain and maintain and therefore we are looking into a structure to have in the maintenance of the whole project. We think about to found a legal entity called STaRC, Study Trial and Research Centre, and this will continue with the work we have done in p-medicine. At the moment we are writing a business plan. This is one of the obstacles to get this project running in the future as well.
The other obstacle is us seeing how to deal with the data. The problem is many data are hosted in hospital information systems, many data hosted in labs, many data are imaging data, many data are clinical data etc. Really to bring them together in the future and this is something where I believe we have to put the patients in the driver seat. The question is to whom these data are belonging; in my view to the patients and they should decide who can use these data or not. If we have them in the driver seat and having patient empowerment, which is also one of the work packages in p-medicine, I believe that they can help us to sustain this kind of infrastructure for the benefit of patients.
The future of the project is to really run clinical trials on that, having access also to biobanking, to really get new knowledge of all of these data. This is something where I believe we will really go to personalised medicine. Paediatric oncology has run for more than thirty years now prospective clinical trials on more than 90% of all patients on a nationwide basis. In adult oncologies only 5% of patients were entered in a prospective clinical trial. The reason why in paediatric oncology we had this many patients enrolled in prospective clinical trials is because this is a rare disease. With the knowledge coming from molecular biology we face the problem that also adult cancers get rare diseases. So breast cancer is not breast cancer, it’s depending on the genotype of each individual breast cancer. So we are needed to run more individualised treatments and this is only possible if we really join and get all these data together. Therefore a new way of prospective clinical trials will come up, we need to build up models for predicting something for the patient, having decisions approach tools coming out of this new knowledge. This is what is the future of p-medicine and hopefully of STaRC.
It’s a pleasure for me to be here on this meeting which is dealing with translational cancer research. This is very important because it’s a kind of summer school; there are summer courses for students and the students have to learn from different stakeholders what is the future of translational research in medicine. It’s facing cancer and this is really very, very good in a wonderful surrounding here.