We have been talking about the importance of data in medicine. The age of digitalization and easy access to new technologies by all has promoted that huge amounts of data circulate through shared networks and own systems.
We have also pointed out the crucial importance of the state of these data: standardization, quality, accessibility. With this, using systems that analyze this information and learn from it, we can draw new relevant conclusions regarding health, which is undoubtedly a benefit for medicine in general, and in particular for the patient.
The patient, on the other hand, has more and more control over his health data. A few months ago we attended a working session exclusively devoted to the concept of sharing these data in order to accelerate research, drugs development and knowledge about a particular disease. Was this event promoted by the clinical or pharmaceutical community?.No!. It was a patient´s organization, very active for years, which managed to bring together clinicians, industry representatives, researchers and regulators to create a “manifesto” which captures black on white that patients are the owners of their data and that they want to share them to advance the knowledge and treatment of their disease.
The premise for data to be useful is that they can be shared. To be shareable, they have to be protected. The confidentiality of data in health history is one of the main challenges of health systems in general. We need new ways to manage the data and trace the creation of value: its origin, custody and secondary uses. The ability to access to large data sets will be key to developing expert systems. But access to these data sets has to be achieved by protecting the rights of patients and preserving their anonymity.
The new European General Data Protection Regulation (GDPR) gives patients unprecedented power over their data rights. We need to take this opportunity and generate new mechanisms that allow data to flow safely. As an example of practical application of the concepts underpinning GDPR: the old model where the hospital was the main responsible for the custody of the data will cease to be, as patients can now go to their Health Center and inmediately reclaim their data in a digital format.
This will certainly be a giant step towards the new way of doing medicine. At Foundation29 we are committed to doing our part and put our grain of sand to make it come true.
Author: Yolanda Ludeña is Project Manager in Health29
Photo: Unknown author licensed by CC BY NC