Fast insight into the effect of medicine with Real World Monitoring

In which patient groups is the medication used, and what is the efficacy within those groups? In order to learn faster about the effects of new drugs, IKNL initiated a process with Performation (part of Enovation since February 2025) to monitor the effects of (new) drugs early after the start of treatment. This was initially done for one type of haematological cancer, by way of a pilot project.

Dr. Merkx

The goal is to build a faster-advancing healthcare system, as head and neck oncologist doctor Thijs Merkx (Radboudumc, Nijmegen , NL), chair of the board of directors of IKNL, and internist-haematologist doctor Ward Posthuma (Reinier de Graaf, Delft, NL) and medical advisor to IKNL, explain.

In recent years, the Netherlands Cancer Registry (Nederlandse Kankerregistratie, or NKR), in consultation with healthcare professionals, has been enriched with additional clinical data to improve mirror data. However, in addition to clinical trials, there is a need for faster feedback on this real-world data when using new drugs. That is why IKNL started the R(H)ONDA project [Realtime (Hemato) ONcology DAta].

This project uses the Datagateway, which has been installed in over forty Dutch hospitals and provides secure access to current data regarding e.g. hospital admissions, transactions and prescription medications. Within the R(H)ONDA project, such data can be connected to the NKR – in an anonymous way – providing quicker insight into which new tools are being used in practice and what their effects are.

Nothing is more difficult than having to tell a person in the consultation room that they cannot receive the treatment they need

Updated information required

Optimal healthcare organisation management through the use of data. That is what we are supported in.– especially in the areas of capacity management, finance, healthcare registration and management information. The Datagateway system provides access to years of up-to-date healthcare data.

Currently, the question has arisen of whether it can’t also be used to learn from. ‘For example, in The Netherlands there is increasingly more discussion about expensive medication – can you develop “guideline information” for the consultation room?’, Thijs Merkx wonders. ‘This question is posed by the Dutch Ministry of Health, Welfare and Sport, the Dutch National Healthcare Institute (Zorginstituut Nederland), and the EMA, as well as the individual hospitals. In addition, increasingly more new medication is becoming available. So what are the decision moments to authorise a particular medication or to decline it? In the consultation room, the challenge is to determine who will or will not be prescribed expensive medication, and why and for how long. Oncology patient records are often complex, sometimes combined with many other health conditions. You can start collecting all the data manually one year after treatment, but you’d rather have that information available in the consultation room when the patient is sitting across from you.’

Practical lessons from the consultation room

The R(H)ONDA project was set up to see what is happening in the various consultation rooms, and to determine whether we can learn from that. In practice, for example, more and more medication is being given in combination. Merkx: “The question is also is everything that is possible required, and is everything that is required possible?

Last year, we released the report named ‘An overview of metastatic cancer’ (Uitgezaaide kanker in beeld). It shows that, in the past ten years, patients coming in with metastatic cancer have had a survival gain of just one month. And this while billions of euros have been spent on expensive medication. The fact that quality of life has not improved for patients taking such medication, is even more sad. We are noticing an effect of these new, expensive drugs in melanoma and hematology patients, but we rarely see any effect in metastatic gastric, colon and liver cancers. We can determine this diversity retrospectively, but fully updated management information is what we really need. There is nothing more difficult than having to tell someone in the consultation room that they cannot receive the treatment they need if you don’t have information about it.”

Faster access to information

Ward Posthuma thinks of the Olympic motto ‘Citius, altius, fortius’ – faster, higher, stronger. ‘We have already enriched the data with the NKR, now we have arrived at ‘citius’: being able to access that enriched data more quickly. Stronger also means legally safeguarding and properly establishing this project’s digital infrastructure. The ultimate goal is to reduce the impact of cancer. An example: at IKNL we have already managed to make a difference in the treatment of diffuse large B-cell lymphoma with R-CHOP with the NKR data from the past. This was provided once every two or three weeks. We noticed that the survival rate remained exactly the same, but a lot more neuropathy occurred with the biweekly dose. Also, it was much more expensive, since it led to a lot more infections and hospital admissions. Yet previously, you had to look back years into the past.

Now we want to have things up to date quickly, for example when using expensive medication for lung cancer with all of its possible different mutations. Another aspect is that a randomised trial also shows a bias, due to the often strict inclusion criteria. It’s better to look at the entire population, and a project like this can quickly provide additional information.”

The Datagateway system retrieves all kinds of information in real time. We then connect that data to the NKR data, which leads to a nice synergy

Efficient use

Of course, Performation is a natural partner in the process, says Posthuma. ‘The company has secure access to source data in hospitals through the Datagateway. By using the Datagateway, they are able to retrieve all kinds of information in real time, even as recent as yesterday. We are going to connect it with the NKR data, which provides a nice synergy. Recently, we organised a first “dry run” session in one of the hospitals to look at the use of daratumumab in multiple myeloma cases, and it worked. Through that Datagateway, we know which patients are present and who is taking which medication, from as recently as yesterday

Dr. Ward Posthuma

Ultimately, our aim is to use the tool effectively and efficiently, and big data is finally going to pay off for that purpose. The bottom line is short-term cyclical improvement, with good information.’ Merkx adds: ‘Another factor is that nowadays, a large number of oncology patients are being diagnosed and treated in multiple hospitals. We can also learn from that, while facilitating networking at the same time.’

This project not only provides benefits for healthcare staff and patients, but also for society at large. Merkx: ‘You can use medication more efficiently. If something is proven to be ineffective, you’ll know sooner and you can stop earlier.’

If you would like more information about Real World Monitoring and the Data Gateway or our other solutions within the Enovation Platform, we would be happy to discuss this with you further.

Performation is part of Enovation. 

Source citations: The original, complete article “RHONDA: up-to-date information about the use of new (haemato) oncology drugs” was published in the medical scientific magazine “Oncologie Up-to-date” and can be read online. 

Photo by Thijs Merkx: (© Femke van den Heuvel) 
Header image photo: André Roque Almeida / Shutterstock.com