Towards more individualised cancer screening
The NIASC, a Nordic Centre of Excellence in Health-Related e-Sciences, was launched on 1 January 2014 with a five-year allocation of roughly NOK 40 million from NordForsk. The NIASC brings together physicians, bioinformaticians, specialists in disease screening and computer experts to develop new and improved methods of customising screenings for various types of cancer. Currently, the Nordic countries employ a “one size fits all” strategy when it comes to who should be screened and how often. But this approach is being challenged by Centre Director and Professor Joakim Dillner, of Karolinska Instituttet in Stockholm, and his team. The NIASC is seeking ways to tailor screening to facilitate testing based on individual disease risk. This will have a beneficial impact on public health as well as on how priorities for use of resources within the health and care sector are determined.
Exchange of knowledge and ideas
At the Biomedicum Helsinki centre for medical research and training, the various NIASC partners discussed the status and progress of their respective efforts as a basis for exchanging ideas and knowledge. Professor Dillner summarised the current operations at the NIASC centre as well as its overall objectives, and three PhD students and five post-doctoral research fellows presented their projects. This elicited many questions from fellow researchers as well as requests to meet subsequently for further discussion – thus fulfilling one of the purposes of the annual meeting: to promote further cooperation among NIASC participants.
Senior lecturer Mark Clements presented his project on more precise prediction of prostate cancer, with the aim of minimising the drawbacks of screenings. PhD student Nicolas Baltzer presented his project on defining the risks of developing cervical cancer based on previous cell sample results, and Senior Medical Officer Mari Nygård explained her work with new methods to raise public awareness about cancer symptoms. She links the concept of “nudging” – encouraging people to be proactive and safeguard their own health by seeking out relevant screenings – to the medical research. Other presentations included work on text mining (reviewing unstructured textual data in journals to extract useful information that is not easily accessible from registries) and on access to biobank registries with biological samples.
Open Access to sensitive data
Sverker Holmgren, NordForsk’s Programme Director for the Nordic eScience Globalisation Initiative (NeGI), spoke with the researchers about Open Access to their data, which is a high priority at NordForsk. Nearly all of the NIASC’s data are sensitive since they contain markers that can identify individuals, and there are special requirements and restrictions relating to the sharing of such data. While astronomers do not need to ask the stars for permission to share the data they compile, open access to the NIASC’s data is much more complex because it required the consent of the patients. There is no clearly-defined procedure for how to obtain this consent; it is a process under ongoing development. Joel Hedlund, Coordinator for Bio- and Medical Sciences at the Nordic e-Infrastructure Collaboration (NeIC), spoke about the NeIC’s ability to develop systems to process sensitive data that may be useful to NIASC researchers.
Ample willingness to cooperate
“After this first year, all the research plans listed in our application now have concrete content, and we know our objectives and frameworks in great detail. We are missing just a few recruits, and this will fall into place in 2015,” concluded Centre Director Dillner at the end of the day.
The day before the annual meeting, the NIASC management team met with the centre’s Science Advisory Board (SAB), which follows up the scientific quality and development of the work. The board was full of praise for the NAISC work so far. The day after the annual meeting was dedicated to a training course, Mining Data in Complex Disease Genetics. There were lectures on next-generation sequencing , data mining, machine learning and micro-simulation. In all, 131 Nordic and Baltic researchers, from doctoral students to professors, attended the training course.
Project coordinator and PhD in medicine Karin Sundström summed up her impressions so far:
“I’m co-supervisor for several of our students from eScience, and it’s both challenging and rewarding to work so closely with another discipline. It’s so important to communicate really well.”
Joakim Dillner adds:
“The NIASC is doing something very new, and the willingness to cooperate has gone way beyond what I expected. I knew that the partners were interested in working together, but I’m talking about people really contributing, helping each other and sharing knowledge. Open working relations have been established very quickly. Collaboration is extremely dynamic and has its own momentum. For example, we now know that the Cancer Registry of Norway is working to cut paper-based communication with patients, which is impressive. This is something we have learned through the NIASC which we in neighbouring countries would not have known otherwise. There are many hopeful signs that the NIASC’s results will prove greatly beneficial to the public.”
Text and photos: Linn Hoff Jensen