Abstract
Background: Parkinson’s disease presents unique challenges in healthcare delivery due to its symptom complexity and the progressive nature of the condition, requiring coordinated care across multiple healthcare disciplines. In response to the limitations of traditional, fragmented care models, the healthcare system is increasingly shifting towards integrated, Value-Based Care (VBC), highlighting the need for innovative quality monitoring frameworks and real-world evidence supported by digital health technologies. Effective monitoring and evaluation are thus essential to ensure evidence-based program design that addresses the complex needs of all people with Parkinson's (PwP). Here, we present the process and results of the quality monitoring framework by outlining key domains, indicators and data sources to monitor equity and the quality of person-centred and digitally-enabled integrated care in Parkinson’s.
Approach: The quality monitoring and evaluation framework for Parkinson's Disease (Réseaux de Compétences: Maladies Neurodégénératives) was developed in a multiphased approach in collaboration with the Ministry of Health as part of a national initiative to implement integrated care models for various health conditions across Luxembourg. The development of the PD-relevant indicators involved a consultative process within a multidisciplinary team, including neurologists, nurses, allied healthcare professionals, patient representatives, and researchers of various backgrounds and expertise. A core set of indicators was proposed for baseline data collection and annual project monitoring, along with key patient characteristics and various data sources to support real-world monitoring. A feasibility study was conducted to determine the digital readiness among healthcare professionals and a minimal set of indicators that could be collected in the first year.
Results: A core set of 20 indicators for digitally enabled integrated care was proposed, directly contributing to the healthcare system's quadruple aim: enhancing population well-being, improving patient and healthcare provider experiences, and reducing costs. These indicators were organised into four primary domains: (1) Patient Outcomes, Experiences, and Capabilities, encompassing clinical data, quality of life, patient-reported outcomes and experience, and empowerment; (2) Process Outcomes, covering healthcare utilisation, adherence to clinical guidance, and digital engagement among patients and healthcare professionals; (3) System Structure and Capacity, which includes healthcare professional training and competencies, operational and coordination costs, and related infrastructure; and (4) Healthcare Professional Work Satisfaction, focused on job fulfilment and well-being. Patient characteristics included measurements of sociodemographic status, digital (health) literacy and disease severity. Real-world data sources included patient and healthcare professional questionnaires via digital apps, electronic health records, health claims, and administrative data. Initial assessment showed challenges in adopting digital health technologies and a need to implement fewer indicators at the first stage.
Implications: This framework presents a comprehensive model for quality monitoring in digitally enabled, integrated care for Parkinson’s disease, offering essential indicators to evaluate and optimise VBC. By focusing on patient-centred outcomes and integrating digital health technologies, the framework aligns with healthcare systems' goals to provide effective, efficient, equitable, timely, and safe services in an era of digital transformation. While the model has significant potential, challenges remain in ensuring the feasibility of consistent data collection, integration across various healthcare providers, and maintaining engagement with digital health technologies.