‘Research and policy are closely intertwined’

At the NTS since 1998, that is special!

‘Yes, I never would have thought that when I started here. That’s because this is a very specific field that is always in motion. I came in with my broad degree in General Social Sciences and thought at the time: the NTS is a postage stamp within medicine, I’ll be done with that after five years. But every development leads to great new opportunities. New things keep coming my way where I think: I absolutely want to do this. I also love the position of the NTS in the field. We are an independent administrative body and the primary advisor to the ministry, and we work with many parties.’

What subject do you focus on?

‘Four themes play a role at the NTS: donation, organ and tissue retrieval, allocation, and transplantation. My theme is donation. I started here when the Organ Donation Act was introduced and have seen the entire field grow. I have continually contributed to that from my experience.’

Can you tell us in a nutshell how that went?

‘It started with doctors having to fill out the donation form in the event of death. This allowed me to investigate in which cases donation did not proceed and what the bottlenecks were. The biggest problem was that few surviving relatives gave permission for donation if the deceased had not recorded a choice. The research, which I obtained my PhD on in 2012, showed that this refusal was related to the guidance and support of surviving relatives in the hospital. That is why we developed the ‘Communication around Donation’ training to teach doctors how to have good conversations with surviving relatives. I now supervise researchers who are pursuing their PhDs on this subject. In addition, in 2008 we implemented the Donation Master Plan. Its goal was to establish donation regions with donation coordinators and donation intensivists. We are still working on organizing the donation process more efficiently. My role is to brainstorm and advise on how to shape this.’

Does the new donor law affect your work?

‘Most certainly, I deal with that on a daily basis. Part of the new donor law is the Donation Quality Standard. This means that all doctors have the conversation about donation with surviving relatives in a uniform manner. As the NTS, we are working hard to ensure that all doctors in all healthcare institutions know the content of that quality standard. This is important because not everyone in the Netherlands will register. For people who do not respond to repeated calls to register, ‘no objection’ will be entered in the Donor Register. And no objection means permission for donation. In that case, the role of the surviving relatives is not paramount during the donation conversation, but the registration of the deceased is leading. In the new situation, the doctor must inform the surviving relatives about the ‘no objection’ registration. Asking for permission will no longer be necessary. Therefore, the training of doctors is being adapted. The policy surrounding that quality standard is part of my duties.’

Do you work more on policy or on research?

‘They flow into one another. Research leads to policy and vice versa. For example, I research how many patients in hospitals could potentially be donors and analyze why a donation cannot proceed. To remove the bottlenecks for that, policy is then needed again. Implementing changes regarding the donor law is also policy-driven.’

Does your work take place only in the Netherlands?

‘No, I am also the chair of the board of the European Donation and Transplantation Coordination Organization, EDTCO for short. This allows me to see what is going well in other countries and what we can learn from them. Those international contacts provide a lot of input for my work at the NTS and for the connection between research and policy. That is very valuable. And that part of my work also remains endlessly fascinating.’