What does NHR stand for?
'The NHR is a platform for physicians to gain relevant insights into results of care processes by collecting, analyzing and publishing data. This enables both direct quality control and improvement as well as scientific research. The NHR stands for a reliable, high-quality, scientifically based, transparent, innovative and service-providing environment in which doctors are supported to monitor and improve quality.'
What does the NHR hope to get out of the partnership with the DCVA?
'The DCVA can give an enormous boost to the NHR and make the NHR an internationally unique link in a network of physicians and researchers. The integrated cardiological and cardio-surgical perspective of the NHR is already unique. The development from quality registration into an advanced research environment in which data is stored centrally, can be reused according to FAIR principles and is accessible for research, would lead to an internationally unique structure. The NHR is and remains a service provider and can thus make an important contribution to the network of parties involved in DCVA. This network structure can only be developed if all parties involved in the DCVA contribute in terms of vision, strategy and practical efforts.'
What does NHR add to the DCVA, why should we be happy that NHR is participating? Who ultimately benefits the most?
'The NHR can add to the DCVA, and all parties involved, by creating a single data platform. In addition to data for quality assurance and improvement, this platform also allows research data to be collected and stored centrally. Because the NHR can offer the right legal, organizational, data safety and IT infrastructure, it is possible to make and keep data available according to FAIR principles. In this way, high-quality data can be made available for research within the correct legal framework. From a research perspective, the value of the data is retained after answering the initial research question. In the long term, this will enable randomized research “on top off” quality registrations, so that real world data can form the basis for research.'
'In light of future developments, with more and more data becoming available from wearables and devices and advanced analysis techniques such as AI and machine learning offering more and more analysis options, the NHR can make a strong contribution to a unique learning environment in cardiac care. Doctors and researchers benefit from this, but more importantly, ultimately the patient benefits, because new insights are developed that further improve the quality of care and thus outcomes.'
Question from Harteraad
Harteraad serves as a guide for people with cardiovascular disease, so that they can get the most out of their lives. With a focus on improving the quality of life. In what way can the results of the NHR contribute to this?
'The NHR and the Harteraad find each other in the primary focus on the interests of the patient. Within the NHR this is translated into measuring and improving the outcomes of care. This concerns outcomes such as survival, complications, re-procedures and certainly also the quality of life. Within the value-based healthcare program of the NHR, data on the quality of life before and after cardiac treatment of almost 8,000 patients is now available. By analyzing this data together with physicians, the NHR wants to contribute to gaining insight into which treatment leads to the greatest health gain under which circumstances. In the long term, for example, all information from the NHR can also be used in decision support for patients and physicians. Quality of life, in both the physical and psychological dimensions, will be an important element in this. In this development we would like to work closely with the Harteraad.'