15 July 2020
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BBMRI.nl interview series: Stefan Willems

In order to showcase the variety of work in BBMRI.nl, we dedicate special news items to BBMRI.nl investigators. We ask them about their work for BBMRI.nl. What excites and challenges them the most, especially during the present COVID-19 pandemic? And how do they see the future for our activities?

What is your job title and what does your day-to-day job imply?
On March 1st 2020 I was appointed head of the department of pathology and medical biology of the UMCG. My main task is to facilitate that everything is running smoothly in the department such as the diagnostics, research and education. Besides that, I also do diagnostic work and research. I am vice-chair of the PALGA foundation and as such actively involved in BBMRI.nl.

Prof. Stefan Willems

What is the focus of your work within the BBMRI.nl project?
I am involved in Work Package 4 – Linking of Biobanks to Clinical Registries, together with Annette Gijsbers, Tieneke Schaaij-Visser, Sofie Hansen and Folkert van Kemenade, who do most of the work. This work focuses on promoting and enabling secondary use of available personal samples and data (from research, healthcare and population studies) for scientific research. We want to facilitate access to biobanks and clinical registries. We collaborate with Lygature and Health-RI to get the request portal up and running, improve it further and work on an even better use of the Dutch National Tissuebank Portal (DNTP).

As the funding of BBMRI.nl 2.0 will end this year, we now discuss the opportunities to continue the work we do on the DNTP. Over the last months BBMRI.nl has actively gathered valuable feedback on the project to improve it further. Researchers tell us that they really appreciate the work of all the HUB employees and how it facilitates their research. To make the unique DNTP concept future-proof, we have to include a robust financial and managerial embedding. This requires input and engagement of all relevant parties including the UMCs, The Dutch Society of Pathology (NVVP), PALGA as well as BBMRI.nl/Health-RI. It’s energizing to see how all these important stakeholders work together now on this shared goal.

How does your work within BBMRI.nl relate to your other work/projects/activities?
In the first place, it relates to my role as vice-chair of the PALGA foundation. I am actively involved in discussions on how to optimally manage the linking of data to the tissue blocks that are distributed through the DNTP network. Secondly, my work within BBMRI.nl relates to my role as head of the  department at the UMC. The UMCs are important users of the tissue samples and data. It is my responsibility to create the optimal circumstances for the HUB employees locally to work in a logical, efficient and sustainable way. It is also crucial to consider the role and perspective of non-academic labs. That’s where most tissue samples are located! In the end, we must find a way to ensure that we organize the logistics and finances in such a way that it is a win-win situation for everyone. Lastly, as a researcher, I benefit from this portal as well. It relieves us researchers from the logistical and managerial aspects. We researchers don’t want to spend too much time on that.  However, researchers do understand that there’s no such thing as free lunch. It is realistic to expect that in the future some of the costs of the DNTP service will need to be covered. For instance, by reserving budget for it in a grant proposal. Like any other service provider, the DNTP would ask a realistic fee for service.

What do you enjoy the most about your work on the project?
What really gives me energy is that we are now setting our goals and think about what is needed to build a sustainable infrastructure. Together with stakeholders such as the NVVP, PALGA, BBMRI.nl and Health-RI, the department heads of the UMCs and others. It is important for Health-RI – to proactively make BBMRI.nl more visible for non-pathology researchers. Other disciplines can benefit enormously from this very rich, well-documented source of data and tissues.

What is challenging about your work?
The challenge is to keep in mind the perspectives of all stakeholders involved. There are parties that provide the data and tissues – PALGA and the pathologist, the latter represented by the NVVP. Governance and finances are also crucial, so we must design a format that both UMCs and the non-academic labs are happy to cooperate in. We really made nice progress the over the last weeks. It shows the confidence and trust that we are aiming for the same goal.

What do you think is the importance of the project for the wider field of data sharing and health research?
I think it will set an example of how things could be organised in The Netherlands. In fact, the way we share data through the PALGA portal already set an example of an initiative with nation-wide coverage of linked datasets. Linking data to tissue blocks, which started in BBMRI.nl 1.0, was an important complementary step. I think because it is a nation-wide initiative, it could really be a blueprint for organising other data sets or biobank sets outside the BBMRI.nl network. Moreover, we learn a lot from the project on how you deal with finances and stakeholders, which is helpful for other projects and is as significant as the project itself.

What makes BBMRI.nl unique in your view?
BBMRI.nl has the potential to connect all different sources of biobanks and accompanying data. I think it is a unique infrastructure that we should be proud of. We must definitely take this further – within Health-RI, where we could involve more and important stakeholders. It is not the time anymore for individual researchers to be working by themselves. The present time revolves around large data sets, real-time live data and prioritizes cooperation between different stakeholders. That is what we have presented here – the infrastructure that researchers need today AND tomorrow.

Which BBMRI.nl product or accomplishment would you highlight as deserving more attention, and why?
Considering the technological infrastructure – the way the portal is being built and delivered – we integrate requests upfront and connect data and tissues at the back. This makes life easier for the researcher. Of course, things can still be improved but it is already a nice example of how it can work as a one “one stop shop” for researchers. From a practical perspective, we learned a lot from the bilateral linkage of data. That experience paved the way to broaden it to larger data sets and tissues. This shows the real strength of BBMRI.nl. It is something we should work on more extensively in the future – not only connecting biobanks but also the data behind.

How do you foresee the future for the BBMRI.nl activities?
I think it is a great opportunity that we can merge with Health-RI. It makes us sustainable and also not just dependent on grants but financed by other organisations such as the Netherlands Federation of University Medical Centres (NFU). This shows that more organisations support this initiative. Furthermore, I think we should explore how to proceed with the initiatives we perform for Health-RI. It is very energizing to see other colleagues being active in these initiatives. The trick is to stay connected with individual researchers and keep an open mind and listen to their needs and wishes in an iterative way. Things invented within Health-RI should be in line with what that researcher needs. It is vital to keep researchers engaged. We should not create one big organisation that stands too far from them.

How has the COVID-19 crisis impacted your work?
We have the possibility to do data-research online. It has its limits but allows a lot of the data work to continue. However, I miss the informal contacts and meetings. I hear from many people that we now more than ever realize how important it is to meet each other. Meetings can become digital but the need for physical and basic human interactions is crucial too!

How have you adapted to the new circumstances created by the pandemic?
As a department head in these uncertain times I feel that communication is more important than ever. Nevertheless, communication is hampered by the fact we don’t meet physically. Thus, it takes a lot of my time as I have weekly emails, many video conferences that are not as focused on content, but on the process to get everyone on the same page. Moreover, the employees hold frequent phone calls with each other to touch base, see if everyone is socially and emotionally doing alright and make sure they do the same with their students, post-docs and others. We also introduced a special coffee-hour for PhD students and postdocs to discuss issues and share their stories with the management teams of the department. And sometimes I still don’t succeed as much as I hoped to. However, this gives me energy too as I see that people appreciate it. I think we need to feel we are all in this together. There is a sort of common awareness and solidarity in these times.

How do you mitigate the (negative) impact of the crisis on your work?
Our “wet lab” research has been very much downscaled for over two months now. We are currently restarting it again, which goes well so far. However, we have international PhD students that came to The Netherlands specifically for the research. Their research is now delayed, and the students feel isolated due to this situation. It takes energy to get them emotionally and socially involved. Moreover, the delay will cause some financial damage as well, which is felt nation- and world-wide. That is what it is, we must find ways to relieve the burden. 

What new emerging opportunities do you see the present COVID-19 pandemic has created?
This crisis gives the possibility to boost the digital evolution. For instance, as pathology labs we are increasingly exchanging digital slides between labs. We were urged to make it work technically and legally. For example, in the Northern region, we are now able to exchange slides safely between all partners within the Collaborating Pathology Labs North Netherlands (SPNN). This process proved to us that, when everyone feels the urge, things can happen fast. The crisis highlights many other activities that can also be done digitally and remotely. Digital meetings can often be great alternatives. We also re-evaluated the purpose of many meetings we used to have and decided some of them don’t add value or could be merged. It helped us to make our organisation leaner. The most important lesson for me from this COVID-19 crisis however is that despite all amazing technologies, in the long end, a minimum of physical human interaction is essential to keep the organisation healthy.