'Research and policy are closely linked.'

Working at the NTS since 1998, that's 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 here with my broad degree in General Social Sciences and thought at the time: the NTS is a small niche within medicine, I'll be bored of this after five years. But every development leads to new, wonderful opportunities. New things keep coming my way where I think: I absolutely want to do this. I also appreciate the NTS's position in the field. We are an independent administrative body and are the primary advisor to the ministry, and we work with many parties.'

What subject do you focus on?

'There are four themes at the NTS: donation, retrieval of organs and tissues, allocation thereof, 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 consistently contributed to that based on my experience.'

Can you tell us in a nutshell how that went?

'It started with doctors having to fill out the donation form upon 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, for which I received my PhD in 2012, showed that this refusal was related to the 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 working on their PhDs on this subject. In addition, we implemented the Donation Master Plan in 2008. Its goal was to set up donation regions with donation coordinators and donation intensivists. We are still working on organizing donation more efficiently. My role is to help think about how to implement this.'

Does the new donor law affect your work?

'Certainly, I deal with that daily. 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. That 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 consent for donation. In that case, the role of the surviving relatives is not the priority in 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. That is why the training for doctors is being adjusted. The policy surrounding that quality standard is part of my duties.'

Do you work more on policy or research?

'It flows into one another. Research leads to policy and vice versa. For example, I investigate how many patients in hospitals could potentially be donors and analyze why donation cannot proceed. To remove the bottlenecks for that, policy is needed again. Implementing changes regarding the donor law is also policy-related.'

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, or EDTCO for short. This allows me to see what is going well in other countries and what we can learn from that. 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 fascinating.'