An important feature to improve quality of care is to reduce variation and learn from best practices with the best outcomes. Although variation in the way care is delivered can be legitimate, there is evidence that differences in outcomes between providers, and in the cause of an international comparison, are inordinately large. To gain insight in the mechanisms leading to variation in quality of care, measurement of performance is crucial: healthcare deliverers may find out what problems they have, and who else may have solved these problems. Measurement of performance on rare disease treatment makes international auditing crucial since a wider geographical and cultural spread increases variation of quality of care. Moreover, with more patients in the audit statistical analysis becomes viable since the sample size is increased.
The general objective of the EPSA (European Pediatric Surgery Audit) is to set up a pan-European patient registry for different congenital intestinal malformations with the aim to standardise the collection of the scarce data from different EU member states and to achieve a sufficient sample size for epidemiological and clinical research. This will result in improved surgical outcome and quality of life of patients suffering from inherited or congenital intestinal anomalies.
Our patient registry will be the first collection of data from prospective studies and consistent reports of patients with an intestinal congenital malformation across Europe. It will be designed to be prospective, multicentre and observational and it will entail a high level of evidence.
We developed the EPSA registry in cooperation with the Dutch Institute for Clinical Auditing (DICA)/ Value2Health. The advantage of this cooperation is the experience of DICA to develop an audit/registry and to set up a framework for data security and privacy protection in an ICT mainframe, which is already developed.
In 2017-2018 ERNICA performed together with EPSA/DICA (company: Value2Health) further development and translation of the already existing Dutch registry for pediatric surgery.