Dr. Harm van Tinteren, head of the trial and data center (TDC), says: 'We can learn a lot from the data that we collect and process very carefully during and after the treatment of children at the Máxima. It is great that our thorough way of working is now officially recognized as a quality registration and that we can take new steps to further improve care in our research hospital.'
Quality Registration
Data about our care and outcomes of care are collected in various ways. For example, the care provided in the Máxima Center and affiliated shared care centers, is recorded in the electronic patient file and the LATER clinic records data on survivors of childhood cancer. All data are linked to the type of tumor for which the child is or was treated. This information and the data also collected before the Máxima was established come together in the Dutch Pediatric Cancer Registry (NKKR).
Van Tinteren explains why the NKKR is important: 'For the first time, the NKKR brings together all existing data at the tumor-specific level. It also incorporates previously internationally established outcome indicators. By learning from the different outcomes of previous treatments, we can further improve care in the Máxima. And in the same time include what is important for survivors in terms of quality of life.'
Recognition
That the data collection and management method set up by the TDC complies with established laws and regulations is evidenced by the inclusion of the NKKR in the register for quality registrations. Margriet van der Heiden-van der Loo is a clinical data researcher at the TDC and coordinated the project to achieve recognition by the Netherlands Healthcare Institute. 'In order to get recognition, a positive opinion from two national committees in this field is needed: the Content Governance Committee (IGC) and the Data Governance Committee (DGC). Last spring, we submitted the NKKR for review. These committees have now issued a positive opinion, valid for the next three years. In the process, we have also received a number of improvement recommendations.'
In practice
Doctors and researchers will use the data from the NKKR in the coming years to monitor the quality of care in the Máxima and to set up learning and improvement processes. The SKION (Netherlands Society of Pediatric Oncology) also uses the data when evaluating guidelines. To make the data accessible, there is close cooperation with the information, data supply and technology (IDT) department. A steering committee has been established to manage the entire process. It consists of representatives of patients, healthcare professionals, professional groups such as the Dutch Society of Pediatrics and an external expert. The NKKR is managed by the TDC and the quality of the data, such as completeness and uniformity, is evaluated annually and adjusted where necessary. Van Tinteren: 'So thanks to the data from the NKKR, we keep constantly improving our care and our organization with the goal of curing every child with cancer with optimal quality of life.'