ParkinsonNet Luxembourg: towards a Digital Support Integrated Care Network for People with Parkinson’s

Background: Digital solutions offer the possibility to improve the management of patient care by increasing and facilitating the communication within the multidisciplinary care team. However, integrating digital medical devices and services into integrated care models, such as those for Parkinson’s disease (PD), comes with several challenges such as the reservations to change by the healthcare professionals (HCPs), the disruption of the care pathway workflows, the management of highly sensitive information and the lack of systems interoperability, among others.

Approach: Taken this into consideration, we aim to improve the communication between the multidisciplinary care team and patients of ParkinsonNet Luxembourg by leveraging the use of digital management solutions and the Luxembourgish Electronic Health Records known as the Dossier de Soins Partagé (DSP). This initiative was co-designed with local stakeholders, including an expert group in PD (n=6), PD patient representatives, and members from the Luxembourgish eHealth agency (eSanté). To test feasibility and engage users, we conducted an anonymous online survey among HCPs of ParkinsonNet Luxembourg (n=85) to understand their perspectives on the usage of digital solutions to collect, store and exchange clinical information.

Results: In total 45 out of 85 invited HCPs answered the online survey. 82.2% of participants confirmed that they would like to use a medical software to document clinical information, and among these, 78.4% are willing to collect clinical information in a structured way. Furthermore, 72.7% of HCPs agreed that clinical information should be stored in the DSP. However, 51.16% believe that the lack of time during a consultation or the complexity of the DSP will be the biggest barriers to integrate DSP into their daily work. These results demonstrate that the planned initiative to exchange structured clinical information via the DSP is feasible within ParkinsonNet Luxembourg, provided that enough guidance is given to the HCPs and that the integration of DSP into their daily work is done without major adjustments to the care pathway and related workflows.

Implications: Addressing potential challenges of the integration of digital solutions into integrated and managed healthcare models requires a strategic planning that considers the local context, the existing resources and the preferences of the care teams. This can be achieved through the integration of different stakeholders very early in the planning stage, the investigation of the preferences of the local care teams, the continuous education of HCPs and the availability of robust funding models to ensure that digital solutions can be seamlessly and sustainably integrated into such comprehensive healthcare models.