Big Biodata Everywhere – the Journey to Personalized Medicine
Personalized Medicine is a revolution that is unfolding at this very moment. The role of the physician will change dramatically, diagnostic and treatment quality will improve greatly, and wearables and devices will be part of daily life: welcome to the Internet of Things – or Patients. These are just a few conclusions from the clinicians, bioinformaticians, geneticists, analysts and government- and NGO-representatives that gathered at two recent conferences: the Biodata World Congress (Cambridge, UK), and the Big Data in Healthcare Symposium (Munsbach, Luxembourg). I had the pleasure to join both; below some of my conclusions.
Handling of (biomedical) data is not so much a Big Data issue; it is a digitalization challenge. Any organization can handle and store Big Data; this is simply a matter of scaling. But how to make sense out of the data? Companies and organizations will have to become digital to remove the data silos, to make the most out of the information. This applies to physicians and researchers that are involved in improving the treatment of patients. Several national cohort- and genome-projects already provide a big wave of information. In the future the patients themselves will own that data, not the physician, but for the time being the latter must be able to make sense out of it, to be able to provide optimal council. Analytics and visualization will become more important, to find the signal in the noise.
The pharmaceutical industry is equally affected by the digitalization challenge. As one of the representatives bluntly stated: “our industry is not used to handling data.” It was no surprise that Eroom’s law was referred to by many speakers: pharma needs to increase its output. The cost of the R&D workforce is too high. Disruptive shifts occur: mobile phones may become medical devices, and some companies that own the consumer data may start to set the pace for pharma, not the other way around. The strategies by which pharma tries to get the most out of data are manifold, but all speakers stressed the importance of collaboration, both within the company, the industry, as well as with academic initiatives and providers.
Data privacy and security are top of mind. The speakers, panelists and audiences heatedly discussed these topics. The opportunity of genomics for better care is obvious, but what if insurances, or governments, or even hackers get access to the data? “Until genomic data cannot be breached anymore, we have an issue.” The cancellation of the safe harbor agreement has created considerable uncertainty. However, as several speakers pointed out, the data security challenge is not unique to genomics (the banking, security and the healthcare industries have been handling private data for decades). A sound security concept that combines stringent access-right management with industry-grade standards can alleviate many of the concerns. On top of that, criminal prosecution of data theft is a powerful deterrent; and already in place.
Taken together, these two events gave compelling insights into the status and future of personalized medicine. Many data, analytics, legal- and moral- challenges are not yet fully resolved, but the pieces are beginning to fall into place.