"Only 8% of patients are candidates for personalized treatment, and only 5% actually get it. And we all know that this theoretical benefit is often no more than a few more months of life. One important question is: Where do we want to go? What is the vision for the future of the scope of precision medicine?"
"When we talk about personalized medicine, we often think only of oncology, but this specialization actually is where it has the least cost-benefit. However, for example, we're seeing that complete sequencing of patients with minority diseases increases diagnosis. We have to think of what is called 4P Medicine: personalized, participative, predictive and preventative."
"As a doctor, I'm clearly seeing the transformation of healthcare and the possibility for bioinformatics to help patients. So, we have to understand that bioinformatics isn't the bad guy, but a good tool that can help us make the system more sustainable. Personalized medicine has to focus on the patient and help us improve not only diagnosis but also making the right decision at any given time."
"We have the facilities, methodology and omics at our fingertips, but transferring it to clinical practice isn't easy. There are very few biomarkers associated with viable treatments: according to the FDA, there are currently only 336 treatments guided by the patient's genomics. Additionally, if we don't have the staff to interpret the data, there's nothing we can do. In this regard, another debate is where to put bioinformatics experts (at the hospital, external companies, etc.). We need multidisciplinary teams of bioinformatics experts with knowledge in different areas, and this leads to the debate on training, what should be included in courses at the hospitals."
"In Catalonia we all have a healthcare card. This is a club very few countries have. Our healthcare system makes us competitive because it gives us populational data without the bias of insurance companies. We are, however, overly zealous about using this data. Without a public-private partnership with transparency rules, we can't move forward. Legislation shouldn't hinder; it should help ensure the data is used properly."
"Putting legal limits on things is putting up hurdles. For example, in rare diseases there isn't more research because there is little data available, and this type of patients would be the first ones willing to share their data. In Catalonia, we know a lot about donation. We've achieved it with organ donations and one organ saves one life. How many lives could you save with your data?"
"When we say data, we don't always mean personal data. There is a new European regulation on personal data, but big data covers many other types, as well. We have to distinguish them by how they are used: it isn't the same to use a patient's personal data to improve their treatment as it is to use data for research. This distinction is very important for understanding the different legal restrictions on what can be done and what can't."
"We are no longer anonymous, and people haven't quite understood that yet. We need to increase transparency and accountability. My concern isn't stopping research, but stopping things that look like research but aren't: now everyone wants data for commercial purposes as well, and more when it is healthcare data. This is sensitive data that requires special protection, because of what it says about us and what it can say. We have to safeguard against patient vulnerability, and that's why we have to demand bioinformatics experts have the same ethical standards as doctors are required to have."