In 2005, paediatric oncologist Thomas Wiebe took the initiative to collect patient records, information and data from children and adolescents who survived cancer in Sweden since the 1970s. The purpose was to make better decisions on treatments with the help of the information gathered.
Five years ago, researcher Helena Linge from Lund University joined the project. What started off as a research project, has since then expanded the register not only to conduct research, but also to make treatment history available to all survivors digitally.
“Since the 1970’s, the biggest challenge was that we had limited insight into how the different symptoms were linked to previous treatments, such as radiation or cytostatics, for example, said Linge. “This meant those patients who sought help later on as adults, may not initially have received the correct treatment or they risked malpractice. The follow-up clinics, so-called Late-Power Clinics that were established nationally in 2017, have meant a step forward for what we are doing.”
Climber, a European business intelligence consulting firm, has helped the BORISS register by introducing the organisation to Qlik, a BI-tool that helps organisations visualise and simplify their data. With Qlik, soon Linge and Wiebe were able to create treatment summaries and filter out groups that matched various risk variables to enable medical professionals to make informed decisions.
“By using Qlik, we can create a visual link between earlier cancer treatment and side effects occurring later in life. For example, we can see how many patients who have suffered from a certain symptom, whether they were male or female, dates these occurred and then identify if there is any connection to heart disease, other cancers, or other serious complications. These are complex data points that require analysis and processing in order for us to draw any conclusions,” says Linge. “It is great that we have got a manageable tool in our clinical everyday life. In BORISS we can easily see all the treatment data and can get background facts quickly and easily, which has made the visits much more efficient. It is an invaluable tool.”