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Centralizing personalized medicine in the Netherlands

15 October 2014, Lindy Bosch

Using the Next Generation Sequencing (NGS) it is currently possible to quickly sequence the whole human genome. It is even within the near future that the technology will permit us to have our personal genome sequenced for a reasonable price. It is however the analysis of that genome sequence that is difficult and time-consuming. In oncology patients it has been known for some time that the treatment efficacy can be dependent on the presence of certain mutations (BRCA, KRAS, BRAF, MUC etc). Even within patient groups with these known mutations, the treatment efficacy varies, likely due to other differences in the genome. To avoid overtreatment, which can cause many unnecessary side-effects and furthermore is costly, it is important to even further personalize cancer treatment by using a centralized approach. Collaboration is essential in order to optimally utilize the NGS technique, share data, interpret data and effectively communicate its implications.

During the FIGON Dutch Medicines Days a round table discussion was initiated to discuss how (central) genome sequencing could facilitate personalized medicine in the Netherlands. SMS-oncology attended this interesting, interactive and important discussion, moderated by Wouter Bos (Chairman of the board of the VU Medical Center in Amsterdam). Different views and perspectives were presented by clinical geneticists, oncologists, pathologists, health authorities, health insurances, hospitals, university medical centers, patient associations and the audience. Unmistakably various points were brought to discussion, which can be summarized in the following four statements:

1. Privacy not to be underestimated – law versus needs
Protecting patient privacy and secure handling of data were regarded as important aspects that should not be underestimated. An optimum between laws versus needs should be established, wherein patient’s demands and improving survival strategies can be regarded as both compatible and contradictory statements.

2. Centralization involves technique, integration and implementation
All stakeholders agreed on the notion that specifically the integration (instead of the NGS technique itself) requires a high level of centralization. Advice regarding the implications of NGS data should be communicated to the involved doctor(s) and consequently to the individual patient. The use of a common standard is of great importance for the interoperability, for which a central tumorboard specialized in analysing the genome sequence could aid in bringing a concrete integrated advice regarding the translation to treatment. Moreover, according to the round table, the implementation strategy of centralizing the NGS concept deserves specific attention since an idea is only as brilliant as its implementation.

3. Improved techniques will increase healthcare demand
Whole genome sequencing will allow better and earlier diagnostics and personalized medicine in the future. Furthermore databases could be created to store all data for (inter)national exchange and stimulating (fundamental) research. Due to improved techniques the healthcare demand only increases. Even though it is expected that better diagnostics will lead to cost reducing, this has never been the case before. It is important to realize that increased healthcare demand will be associated with increased healthcare costs.

4. Direction needed to keep the momentum
In spite of the overall consensus that direction was needed to keep the momentum of implementing a centralized approach to facilitate personalized medicine, it was unclear who should take the lead. Health insurances and the government were mentioned to be good champions to facilitate NGS centralization. But creating support is the first and most important step, as its realization is dependent on the cooperation of all stakeholders in the healthcare industry. Therefore it was suggested that we should perhaps all take the lead.

To this end, increasing awareness and performing clinical trials with personalized medicine is how SMS-oncology wants to contribute to the realization of this promising idea.

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