Warnyta Minnaard represents patient interests and possibilities

Frank van Wijck, science journalist 
 
Warnyta Minnaard has been a member of Hartwig Medical Foundation’s Data Access Board (DAB) since February 2024. For many people in healthcare, she is known for ‘Missie Tumor Onbekend’ (English translation ‘Mission Tumor Unknown’). In the DAB, she sees a clear role for herself to represent patient interests from a broader perspective. 

Minnaard already knew Hartwig Medical Foundation when she was asked last year if she wanted to join the DAB. As co-founder of Missie Tumor Onbekend, she knows the crucial importance of extensive DNA testing and molecular diagnostics in oncological research. “It was an honor to be asked,” she says, “because I saw it as appreciation for my work as a patient advocate for people with Primary Tumor Unknown (PTO), and more broadly in the field of oncology. I immediately thought: What role do I want? I didn’t want to be on the DAB just to approve requests for data related to PTO investigations. I thought it was important to be able to contribute more broadly. I saw a role for myself in assessing applications to consider whether they could be impactful from the patient perspective.” 

A positive experience 
 
Her first experiences were positive. “The number of requests for data that we receive for assessment is very large and they often take a broad approach,” she says. “The process is well organized by Hartwig Medical Foundation and the DAB is encouraged to provide input. It is much more than simply signing off on a request. We get back what we put into it. For applications that are submitted, my main concern is determining whether the studies for which the data will be used are relevant and innovative for patients, if they pave the way to new indication areas.” 

“Fundamental research is important, but you also want to see what the follow-up steps are. That is why I think it is important that patients and patient representatives are involved in positive findings, because they may also play a role in the reimbursement system or in describing suitable patient information.” 

Ensuring quality  
 
The quality of the applications she has seen so far has been high, says Minnaard. “You see very diverse research proposals, from all kinds of countries,” she says. “It would be nice if the Hartwig Medical Database included more data from populations that are not yet represented or currently under-represented, such as patients with rare tumors.” 

“The Hartwig Medical Database is recognized as the most comprehensive tumor DNA database in the world. Researchers are aware of this and are very keen to use the data. Of course, this must be handled with care. After all, it is sensitive data. That is very well known and translates into the quality of the applications that are submitted for assessment. In my opinion, the data must remain as accessible as possible to advance research and patient care.” 

Minnaard has already seen several applications that relate to PTO research. “As a patient advocate, I am involved in such studies, so I always need to assess whether there is a conflict of interest that would prevent me from voting in the DAB,” she says. “That has not happened so far. But it is important to be careful, because I think it is paramount that the DAB is able to provide independent advice. The experience that I gain here, I can also use in other areas.” 

Focus on the patient perspective  
 
Within the DAB, Minnaard emphasizes that she represents the voice of the patient. “In that respect, I think the division of tasks within the DAB is very good, with Mariska Kool and Eline Bunnik focusing on respectively the legal and ethical perspectives,” she says. “It means I can focus on the question: what would the patient think about this and how could it make a difference for future patients?” 

In this regard, she finds it regrettable that she sometimes sees studies that are similar. “It’s not our job to point that out,” she says. “But I do hope those researchers can find one another. There is still so much progress to be made. In that respect, the DAB of Hartwig Medical Foundation is a very interesting environment.” 

More information 

• Data Access Board 

• Interview Ele Visser, DAB 

• Interview Mariska Kool, DAB 

• Interview Eline Bunnik, DAB