Abstract
In this paper, we present a universal model for implementing network care for persons living with chronic diseases, specifically those with rare movement disorders. Building on our longstanding experience with ParkinsonNet, an integrated care network for persons living with Parkinson's disease or a form of atypical parkinsonism, we provide a series of generic, supportive building blocks to (re)design comparable care networks. We discuss the specific challenges related to rare movement disorders and how these challenges can inform a tailored implementation strategy, using the basic building blocks to offer practical guidance. Lastly, we identify three main priorities to facilitate network development for these rare diseases. These include the clustering of different types of rare movement disorders at the network level, the implementation of supportive technology, and the development of interdisciplinary guidelines.
Highlights
Over the past decade, we have witnessed the emergence of care networks for a wide variety of diseases
Building such care networks is in line with the World Health Organization (WHO) global strategy on people-centered and integrated health services and their call for “integrated health services that are managed and delivered in a way that ensures people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, at the different levels and sites of care within the health system, and according to their needs throughout their life course.” [1]
The merits of this network approach have subsequently been evaluated in a series of clinical studies, including both carefully controlled trials [9,10,11,12] and large-scale uncontrolled analyses of a national medical claims database [13]. These studies provided consistent and converging evidence that supports the cost-effectiveness of a network approach, which appears to be mediated by an improved care delivery [3]: the knowledge and use of professional guidelines has enhanced; the caseload of the network participants has increased significantly, initially, but the concentration of care continues to improve over the years [14]; professionals are much better aware of what other disciplines in the network potentially have to offer; interdisciplinary collaboration has improved; health outcomes are better for patients treated within the network, TABLE 1 | Overview of the supportive building blocks of care networks, including a detailed description and examples of how these have been implemented in ParkinsonNet
Summary
We have witnessed the emergence of care networks for a wide variety of diseases.
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