{"id":8105,"date":"2024-10-28T17:36:45","date_gmt":"2024-10-28T16:36:45","guid":{"rendered":"https:\/\/www.hartwigmedicalfoundation.nl\/?p=8105"},"modified":"2025-08-06T09:28:03","modified_gmt":"2025-08-06T07:28:03","slug":"warnyta-minnaard-represents-patient-interests-and-possibilities","status":"publish","type":"post","link":"https:\/\/www.hartwigmedicalfoundation.nl\/en\/warnyta-minnaard-represents-patient-interests-and-possibilities\/","title":{"rendered":"Warnyta Minnaard represents patient interests and possibilities"},"content":{"rendered":"\n

Frank van Wijck, science journalist<\/em> 
 
Warnyta Minnaard has been a member of Hartwig Medical Foundation\u2019s Data Access Board (DAB) since February 2024. For many people in healthcare, she is known for \u2018<\/strong>Missie Tumor Onbekend\u2019 (English translation \u2018<\/strong>Mission Tumor Unknown\u2019). In the DAB, she sees a clear role for herself to represent patient interests from a broader perspective.<\/strong> <\/p>\n\n\n\n

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. \u201cIt was an honor to be asked,\u201d she says, \u201cbecause 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\u2019t 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.\u201d <\/p>\n\n\n\n

Warnyta Minnaard<\/p>“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\u201d<\/cite><\/blockquote><\/figure>\n\n\n\n

A positive experience<\/strong> 
 
Her first experiences were positive. \u201cThe number of requests for data that we receive for assessment is very large and they often take a broad approach,\u201d she says. \u201cThe 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.\u201d <\/p>\n\n\n\n

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Warnyta Minnaard<\/figcaption><\/figure>\n\n\n\n

\u201cFundamental 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.\u201d <\/p>\n\n\n\n

Warnyta Minnaard<\/p>“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\u201d <\/cite><\/blockquote><\/figure>\n\n\n\n

Ensuring quality <\/strong> 
 
The quality of the applications she has seen so far has been high, says Minnaard. \u201cYou see very diverse research proposals, from all kinds of countries,\u201d she says. \u201cIt 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.\u201d <\/p>\n\n\n\n

\u201cThe 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.\u201d <\/p>\n\n\n\n

Minnaard has already seen several applications that relate to PTO research. \u201cAs 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,\u201d she says. \u201cThat 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.\u201d <\/p>\n\n\n\n

Warnyta Minnaard<\/p>“I focus on the question: what would the patient think about this and how could it make a difference for future patients?\u201d<\/cite><\/blockquote><\/figure>\n\n\n\n

Focus on the patient perspective <\/strong> 
 
Within the DAB, Minnaard emphasizes that she represents the voice of the patient. \u201cIn 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,\u201d she says. \u201cIt means I can focus on the question: what would the patient think about this and how could it make a difference for future patients?\u201d <\/p>\n\n\n\n

In this regard, she finds it regrettable that she sometimes sees studies that are similar. \u201cIt’s not our job to point that out,\u201d she says. \u201cBut 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.\u201d <\/p>\n\n\n\n

More information<\/strong> <\/p>\n\n\n\n