The ParkinsonNet approach: a model of integrated care for long term conditions

Introduction : Patients with Parkinson’s disease need long term care and support. ParkinsonNet implemented a model of integrated care provided by a network of specialists. This model is also promising for other long term conditions. Description of policy context and objective : Advances in medical knowledge and technology, escalating healthcare costs, and rising patient expectations and involvement in their care are changing the management of chronic diseases. Before the introduction of ParkinsonNet, Dutch patients were dissatisfied with their care. Treatment was mainly focused on suppression of symptoms with drugs, referral to other disciplines was arbitrary, care was delivered by professionals who had no Parkinson’s specific training or expertise, interdisciplinary collaboration between medical specialists and allied healthcare professionals was inadequate and patients were not involved in decisions about their treatment. ParkinsonNet was developed to tackle these problems by standardizing and integrating the delivery of care to patients. Targeted population : More than 30,000 persons with Parkinson’s disease in the Netherlands. Highlights : (innovation, impact and outcomes) ParkinsonNet established 70 regional networks of selected and highly motivated health professionals (for example neurologists, Parkinson’s nurses, physiotherapists, speech-language therapists, social workers) across the entire country. Treatment guidelines were developed for several disciplines and served as the foundation of compulsory training programs for professionals. Through ongoing treatment of large number of patients, the knowledge and expertise of the specialized networks grew exponentially. ParkinsonNet established an online information technology platform called the Parkinson healthcare finder that allows patients to identify ParkinsonNet specialists. ParkinsonNet also facilitates  web based communities for patients and professionals. The Parkinson Atlas displays quality of care information at the level of regional networks such as numbers of hip fractures. Over 10 years after the first  ParkinsonNet networks, the referral of patients to trained providers improved and the adherence to treatment guidelines increased. Furthermore, the number of fractures decreased significantly, which led to a significant drop in healthcare costs.  Moreover, patients appreciate the ability to identify experts themselves and  ParkinsonNet specialists work with greater job satisfaction. Patients do complain that the ParkinsonNet “label” does not guarantee high quality care. ParkinsonNet is therefore creating a quality of care registry to provide information about the level of expertise and quality of care delivered by all individual ParkinsonNet specialists. Transferability : We have successfully developed a ParkinsonNet network within the health system of  Kaiser Permanente and in one region in Germany, and we will start implementing this model in several other countries. ParkinsonNet can be a model for other long term conditions where management is similarly impaired by lack of expertise among professionals, poor interprofessional collaboration, and a lack of tools to empower patients. Conclusions : ParkinsonNet is a model where care is delivered by a restricted number of trained professionals who collaborate within regional networks. This network based healthcare empowers patients, promotes self management, improves quality of care, and lowers healthcare costs. References : 1- This abstract is based on: Bloem BR, Munneke M. Revolutionising management of chronic disease: the ParkinsonNet approach. BMJ. 2014;348:g1838.