The initiative is called Cancer Core Europe. The Core is the creation of a virtual e-hospital. Six leading cancer centres in Europe have gotten together and have decided to put money on the table from their institutes to create the following model, but let me first tell you which are the six partners so that you know what I’m talking about. So it’s Gustave Roussy in Paris; it’s the Deutsches Krebsforschungszentrum, DKFZ, in Heidelberg; it is Cambridge Cancer Centre; it’s NKI, Netherlands Cancer Institute, Amsterdam; it is Karolinska Institute in Sweden and Vall d’Hebron Institute of Oncology in Barcelona. So these six want to create a virtual e-hospital. That means that we will put in place an IT interface to make the IT systems in the respective centres communicable with one another to create a number of activities. That platform will give access to import the databases that exist in the various institutes but, more importantly, we will start to collect data on all our newly diagnosed patients that we see on a yearly basis, that’s 60,000 per year. We actually treat up to 300,000 patients per year and we see in consultation, in follow-up and other settings in the out-patient setting, more than a million patients a year. The data of these patients will be prospectively put in databases that we have commonly access to and that will create one gigantic database within one IT system meaning that it is directly readable and interpretable for all concerned.
But it needs to be a co-ordinated system because you’ve got an ocean of data. If you have some patient data coming in from bedside to bench or laboratory data from bench, potentially, to bedside, it’s got to make a big splash in that ocean of data, hasn’t it? How will you make that happen?
First of all, all the new patients that come in to this database will be fully clinically annotated according to standard procedures which means that you create now, for the first time, a database that is not lacunary in composition. So all the data that are important for clinical characteristics are in there regarding all the modalities of therapy, the surgery, the irradiation therapy, the systemic therapies, the histopathology, structured databases etc. but also behind it for those patients where we collect samples or those patients who are participating in clinical trials, all the clinical research databases that are behind it. So you can see that there would be different levels of access of clinically annotated data plus clinically annotated research data and clinically translational research data etc. that’s behind it. You can only create these kinds of databases in a fully comprehensive and correct manner if you do it prospectively.
But you need to have a unity of purpose, a unity of mission, that everybody shares. How actually psychologically are you achieving that because you certainly can’t do it from the top down. You get people complaining at the edges pretty quickly.
So that’s very good because this culture, of course, needs to be a widely shared culture within each institute at all levels of participation. This takes an explanatory and a promotional campaign within institutes where you involve layer by layer to create this completeness. Actually the IT infrastructure will greatly facilitate this kind of creation of a culture. Each centre, although one of the leading cancer centres, is far too small to do it all, to significantly make progress in precision cancer medicine development and has always lack of infrastructure in some domains of research and translational research etc., and that you need upscaling and you need to achieve this within a critical mass of the same high quality. So you can only create this consortium if you have six partners who know each other well, who have multiple projects already together with one another but each project is always lacking some aspect and you need the overall system to compensate for lacunary elements and to create a fully annotated system.
And it must become an honour to have an entrance to this e-hospital and access to this database must become the latest must-have gadget.
Yes, and that would also represent, by the completeness of all the technology platforms and infrastructure as well as this critical mass in patient numbers, you become a very attractive partner, of course, for industry. But it also means that you have created a platform that will be capable to do outcome research whereas, quite honestly in oncology, outcome research is often very poor because of very lacunary data in datasets because there are too many specialties involved in outcome research and clinically annotated data is often incomplete. So we promote ourselves as first creating the core to achieve this, which is very, very challenging, this has never been done before, but that core, once established, and if we achieve what we want to achieve, will then open up to additional partners, of course. But you cannot create this kind of a thing if you start with twenty centres; then it’s mission impossible up front. Down the road for the benefits is that we will not only have the complete infrastructure for research but we will also be able to conduct outcome research which otherwise I think is going to be a failure in the domain of oncology whereas it’s much easier in the domain of diabetes management or hypertension management etc. which is often more or less unidisciplinary and oncology is just too complex to do good outcome research with lacunary databases.
So how near to the launch are we before we start establishing this great exploration which will bring a great harvest to benefit?
We have signed our convention; we have allocated our money; we’re acquiring a co-ordinating scientific officer working together with the scientific officers and we will have a series of meetings to bring the different layers of our institutes into this Cancer Core Europe initiative. We will have the IT infrastructure stepwise in place to set this platform for this creation of this common prospective database that will be so quote-unquote perfect. And then we obviously are then committed to give updates on the progress of this creation on an annual basis. We first need to create this and make this a reality before it can have any impact.
So what do you want us all to do? What would you like us all to do now?
Follow and see if we can deliver.