Access to personal health data for research purposes is progressively receiving more & more press attention. Definitely, there are new possibilities of conducting health research by processing & cross-referencing huge volumes of data via sophisticated algorithms. Therefore, there is a growing need to access health databases inclusive of genetic data collections.
This necessity is woven with the need for the development of artificial intelligence in the healthcare system as emphasized by a recent Nuffield Foundation report. It is also woven with the projected possibilities of decreasing health discrepancies via the development of digital health technologies & the progress of precision medicine which looks for caring the patients according to the similarities they share with some subclasses of the population.
Consequently, health data has been labeled as a valuable asset. In the United Kingdom, recent publications concentrated on the commercial value of the National Health Service’s database while in France, articles attempted the need to make sure that large institutional health databases are available for research.
In this background, health database producers harness a lot of attention. Some of the producers are private operators who gathered personal health data for their commercial activities (like pharmaceutical firms’ clinical trials data). But, in France and in the United Kingdom, public institutions are at the center stage because their databases are the largest. Certainly, the National Health Service database of the United Kingdom & the French SNIIRAM database on care & treatment reimbursement, each holds the personal health data of over 65M individuals. If the data is labeled as a valuable asset then, without any doubt, this enormous volume of data represents a wanted treasure. Hence, in France and in the United Kingdom the similar question has been raised: how to make availability of data for research?