We know that today privacy is of concern, privacy and ethics, and the European Union is now launching a new regulation on how to deal with data, amongst that medical data, which is personal data which has to be guarded in a special way. The problem is that this may actually stop epidemiology as we know it and be a set-back going at least 15-20 years back in terms of progress that we can achieve by using registers around Europe that can be linked to cancer registries in the study of reasons for cancer, causes to cancer and outcome and follow-up as well will be impeded.
The European Commission’s Data Protection Act is probably not going to screw us forever because if they made it very strict they’ll have to change it again. Because this new Data Protection Act, if it is implemented as the European Parliament wish it to be, it will stop e-health in Europe, sharing of patients, clinical trials across borders and the long-term follow-up of the patients we treat today. So we can’t really benefit from that treatment and those studies for future cancer patients. So that’s the problem that we have to make clear to the politicians and decision-makers, not only in the European Parliament but also domestically, which is really important because the European Council of Ministers, essentially together with the Commission, can be the deciding powers to stop this insane way the European Parliament has voted for.
And the advent of targeted therapy based on genomics in patients and in their tumours is an opportunity which we’re going to be cut from?
Yes. You can forget all about genomics. There’s no need because this is really very personal data and you have to have the informed consent and you’ll be unable to study whether we are actually doing good to patients because we cannot follow over borders and in time. We can get informed consent today but if you’ve got an idea in ten years and want to go back you can’t find the patient, you can’t get consent and that stops. The solution is a better regulation, a regulation where informed consent is not necessary but where you have in place data protection agencies’ ethical committees that on behalf of the patient, be it alive or dead, can give us the terms for using the data so we are not disclosing or invading the privacy of the person but we can carry on the research on the best data possible. Because this is a matter of quality; if the data quality is deteriorating all our results cannot be used without doubt that was there an error in the data. So we need to be able to identify the individual patient to be sure we’ve got the right data when we get, for instance, a surprise finding we really cannot understand. Sometimes we have to study back into the files to see is this really true or was there a mistake.
The targeting should be done by actually normal patients. So we have alerted all the cancer societies in Europe, the European cancer leagues; we’ve also alerted the cardiologists and the respiratory societies because it’s not only cancer it’s actually all diseases. So we have asked them to approach their local politicians and their local governments because we have to acknowledge the parliament in Europe is actually composed of people from each of the countries and they’re all from political parties. So if we can get the understanding domestically, that should transpose into the European setting as well.
We’re also targeting the European Commission Services which is on behalf of us working for a comprehensive health system in Europe where we can benefit from all the best possible solutions or best possible offers. They understand clearly that if you cannot follow the patients across the borders, if the patient has disease or whatever, we’ll lose what we want to study and want to improve. So that’s two groups we have to target and then of course we’re also targeting the European Parliament. But we have to target other advocacy groups which is consumer agencies that fight for privacy for all of us, which in some instances, when we talk about Facebook, Google and NSA, is understandable. But the point here is that we’re about to flush the baby with the bathwater and that’s not very sensible because one size doesn’t fit all. So where we want to stop whatever is happening on the internet where our privacy is invaded, where we unintendedly disclose our life, to stop that possibility we’re also stopping something really important for all of us – health research and our future possibilities in life. So we have to target consumer agencies, privacy advocates, especially legal people. And we have to alter that to admit that from the medical side, epidemiology being internal medicine, chemotherapy or whatever, we have not been very good in explaining what we are doing and why we are doing it. We’ve always thought live in silence, nobody will care and we can do our bit. That was really the wrong thing to do. We should have been very open, very transparent and very clear about the benefits of what we are doing and why we are doing it because we are doing it for health, not for money into our pockets.
