Column

Judith van Schaik

Getting the engine going

It seems logical, that everyone should get the treatment that suits them best Thanks to recent technological developments (in particular Big Data and AI, artificial intelligence), we can increasingly understand the underlying causes of disease and tailor treatments to the unique characteristics of the individual. In reality, treatment is still usually 'one size fits all'. The promise of Big Data and AI in healthcare is not coming true.

The problem is that parties do not share data

Big data is the fuel for the AI engine. Everything starts with data: large amounts of data that can be collected quickly and directly, are reliable, and come from different sources (such as clinical trial data from the manufacturer, real world data from the hospitals and outcome data from the insurers).

 

Why is data not shared?

First of all, privacy legislation (AVG) seems to be an obstacle. Secondly, data is often not registered and structured in an unambiguous way, which means that data files are not coordinated with each other. In addition, people need to give informed consent before their personal data can be used and for what purpose. This does not work for research that uses data mining: from enormous amounts of data, they find many different complex connections that could never have been thought of beforehand. This creates new, deeper insights into health and disease. In data mining, there is no specific question asked in advance (big data destroys informed consent). And finally, data often represents value and for that reason is often not shared.

We must work on all obstacles

Above all, there must be more mutual trust. Questioning the working methods and integrity of parties with regard to data leads to a sur place, to standstill. We need to get the engine going.

Judith van Schaik
Judith van Schaik