Medicines Policy must be based on real world data 

The recent decision by the National Health Care Institute to re-evaluate expensive cancer medicines in real-world practice is a logical step – but it also exposes what is missing to ensure truly appropriate use of medicines. As long as we do not systematically measure for whom a treatment works, efficiency will remain a paper ambition. 

Two bottlenecks stand in the way: available data are insufficiently utilized, and essential real-world data are not consistently collected. 

Valuable data, but fragmented 
The Netherlands holds a wealth of information: clinical outcomes, genetic profiles, treatment pathways, and healthcare costs. These are spread across sources such as the Netherlands Cancer Registry, Palga, DICA, Vektis, DHD, and the Hartwig Medical Foundation. But as long as these sources are not linked and used as an integrated whole, important insights remain untapped. 

Real world data not collected systematically 
There is also no standard approach for capturing treatment outcomes in real-world settings. When new medicines are approved, it is often not defined in advance which data will be needed for later evaluation. As a result, crucial information is frequently missing at the time of re-assessment – as was recently the case with PARP inhibitors. 

Personalized care requires system change 
With the arrival of dozens of new, often genetically targeted oncology drugs, it is becoming increasingly important to know exactly which patients benefit from which treatments. The rise of personalized oncology medicines makes this urgency greater than ever. The Horizonscan predicts 137 new cancer drugs in the next two years, many aimed at specific molecular characteristics. Without real world data, it is impossible to determine who benefits from which medicine – and the promise of personalized care will not be fulfilled. 

Patient organizations such as the Dutch Cancer Society (NFK) are right to advocate for structural data collection from day one. But without embedding this in policy, it remains optional. 

Time for national coordination 
It is encouraging that the National Health Care Institute advocates for pre-defined data requirements at the point of approval. But a structural approach demands more: national coordination, clear agreements, and collaboration between government, healthcare providers, regulators, researchers, patients, and data repositories. 

In 2024, the Netherlands spent €2.7 billion on oncology drugs. Research shows that a significant portion of this spending yields limited effectiveness. Even a small improvement in efficiency – enabled by better data use – could free up hundreds of millions of euros. For treatments that truly make a difference. 

From by-product to policy 
Real world data should not be a by-product; they must form the foundation of our medicines policy. If we want to know what works, for whom, and why, this must be organized from the very beginning. Not because technology makes it possible, but because we owe it to patients – and because, as a society, we simply cannot afford not to. 

Hans van Snellenberg, former managing director Hartwig Medical Foundation

The Dutch version of this article was published on ZorgVisie, June 26, 2025