Building a patient-centred nationwide integrated cardiac care registry: intermediate results from the Netherlands

Abstract

This paper presents an overview of the development of an integrated patient-centred cardiac care registry spanning the initial 5 years (September 2017 to December 2022). The Netherlands Heart Registration facilitates registration committees in which mandated cardiologists and cardiothoracic surgeons structurally evaluate quality of care using real-world data. With consistent attendance rates exceeding 60%, a valuable network is supported. Over time, the completeness level of the registry has increased. Presently, four out of six quality registries show over 95% completeness in variables that are part of the quality policies of cardiology and cardiothoracic surgery societies. Notably, 93% of the centres voluntarily report outcomes related to open heart surgery and (trans)catheter interventions publicly. Moreover, outcomes after implantable cardioverter-defibrillator and pacemaker procedures are transparently reported by 26 centres. Multiple innovation projects have been initiated by the committees, signalling a shift from publishing outcomes transparently to collaborative efforts in sharing healthcare processes and investigating improvement initiatives. The next steps will focus on the entire pathway of cardiac care for a specific medical condition instead of focusing solely on the outcomes of the procedures. This redirection of focus to a comprehensive assessment of the patient pathway in cardiac care ultimately aims to optimise outcomes for all patients.

Keywords: Cardiology; Netherlands Heart Registration; Public reporting; Quality data; Registries.

Fig. 1

Infographic: Building towards a patient-centred nationwide integrated cardiac care registry. CTC cardiothoracic surgery, PCI percutaneous coronary intervention, THI transcatheter heart valve intervention, ICD implantable cardioverter-defibrillator

Fig. 2

Attendance at registration committee meetings from 2018 to 2022 presented as a three-quarter running average with each line representing a different registration committee. THI transcatheter heart valve intervention, PCI percutaneous coronary intervention, ICD implantable cardioverter-defibrillator. ^aOne centre performs cardiac procedures at two locations, which are both represented on the registration committee as if they were two separate centres. ^bA delegation of cardiologists performing pacemaker/ICD procedures represent their centre on the registration committee. Representatives of 30 centres up to 2021, thereafter 37

Fig. 3

Completeness of the registration of the mandatory set of variables that are part of the quality policies of the Dutch Society for Cardiology and the Dutch Association for Thoracic Surgery for each registry separately (2017–2021). Completeness rates of 98% are targeted for interventions under the Special Medical Procedures Act (Dutch: Wet bijzondere medische verrichtingen (Wbmv)). The aim for the pacemaker registry is 95% completeness THI transcatheter heart valve intervention, PCI percutaneous coronary intervention, ICD implantable cardioverter-defibrillator. ^aOne centre performs cardiac procedures at two locations and is therefore considered in the analyses to be two separate centres

Fig. 4

Average response on 5‑point Likert scale for aspects of data registration and services within the Netherlands Heart Registration per year (2018–2021) compared to legal predecessors