How can you evaluate whether every patient in the Netherlands receives the best fitting treatment? Malou Kuppen worked as a researcher on the CAPRI registry at the Erasmus School of Health & Policy Management (ESHPM), to answer that question for patients suffering from castration-resistant prostate cancer (an advanced stage of prostate cancer). Data from twenty different hospitals was collected in this registry. During her PhD she worked with CTcue and she is enthusiastic about the application and possibilities it can offer for healthcare.
Even though the CAPRI registry offered promising results, it quickly became clear that it was a time-consuming process to create it: “With this registry, we would like to identify patients and follow them during the rest of their life.” This proved to be an enormous task, Malou tells us: ‘This patient population is quite difficult to characterise from the EHRs because it is not the starting point of the disease, people are gradually developing it. In addition, we also wanted to make an economical evaluation of the results, in particular of the more expensive medicine that are used in daily practice. Therefore, we needed a lot of data about the health care usage.” The data of the 3600 patients was collected manually. “Collecting data from the EHR was very time-consuming. We spend 4 to 5 hours per patient, retyping the information.”
They had the ambition to become a national registry, but more patients equals more work. Malou and her team had to think bigger: “About three years ago we started wondering: are there any possibilities available to identify those patients faster and collect the data more easily?” That’s how things started: “One of the project’s sponsors had told me about CTcue. I sent Roel an email and half an hour later I was on the phone with him.” Malou started identifying the patients with the help of CTcue. She was quick to notice the amount of time she saved by using the application: “Our patient population doesn’t have a common denominator, because of the different characteristics they are quite difficult to identify. CTcue contributed to a much faster and easier way of identifying these patients. Later she also tested the data collection with CTcue: “All the structured data can now easily be extracted from the patient records. Now, instead of five hours manual work, we only spend one hour per patient.”
Malou certainly sees the added value of CTcue for health care: “It is important to be able to evaluate the effect of treatments in daily practice. The selected patient population in studies are often the younger and relatively healthier patients. They are in a better position from the start, compared to other patients that were not included in the research.” From practice, Malou knows that it can sometimes take about three to four years for data to be shared again with hospitals. Often information is already outdated by then. According to Malou, this is precisely the great advantage of CTcue: “We really need that speed, and that is what CTcue can offer. Plans are in place to create a platform that allows hospitals to quickly gain insights into their own data to be able to prescribe the appropriate treatment to their patients.”
Malou is pleased with the use of the application: “I would definitely recommend anyone who wants to do research through inquiring patient records and wants to collect data fast and easily. It can easily be used for both the more complex and simpler questions. In this, David from CTcue also really helped me to become familiar with the application. At the start of the project we worked on the same location, this way I could ask him all my questions.” Malou also greatly appreciates that the privacy of the patient is more guaranteed using CTcue. “You often go through records of patients that you can’t include in your research. That’s why I think it certainly has great added value that patient data is pseudonymised.”