A new approach to care is transforming the lives of patients with Parkinson's disease and has promise for other long term conditions like COPD and rheumatoid arthritis, say Dutch researchers in The BMJ.
Evidence suggests it empowers patients, improves the quality of care, shifts care away from institutions and into the community, and lowers healthcare costs.
Parkinson's disease is a common and disabling neurodegenerative disorder. Most patients live with the disease for many years and the burden on patients and carers is considerable.
ParkinsonNet is a model where care is delivered by a network of specially trained professionals who collaborate through a dedicated online platform to which patients also have access. It was developed to tackle concerns of insufficient training for health professionals and poor communication between health professionals and patients.
Through the platform, patients can find information about treatment options and the trained professionals they need to help them. They are also given the option of having consultations in their own homes through secure video links.
Since its introduction in 2004, ParkinsonNet has now expanded to 66 regional networks and almost 3000 trained experts from 15 different disciplines covering the whole of the Netherlands.
Feedback indicates that patients value the ability to be seen by trained experts who understand the complexity of their condition, while health professionals take pride in being recognised as experts in the disease and value being part of a professional network with similarly interested colleagues with whom they can communicate easily.
"ParkinsonNet has introduced a new 'collaborative culture of care' where specialised professionals and engaged patients work together to try to achieve optimal outcomes," say the authors.
"The model may also be beneficial for patients with other forms of chronic disease, where management is similarly impaired by lack of expertise among professionals, poor inter-professional collaboration, and a lack of tools to empower patients," they add.
In an accompanying podcast, Marko van der Vegt, who was diagnosed with Parkinson's at age 43, talks about how ParkinsonNet has helped him to manage his condition. He describes keeping in contact with specialists from home via video link, which avoids the need to travel to hospital, and says this gives him important "self empowerment." He says the network enables him to "get the best care" and this "helps me in coping with Parkinson's."
Also in the podcast, lead author Professor Bastiaan Bloem points to independent evidence showing that ParkinsonNet not only leads to more informed patients and better quality care, but "at a national level, has led to up to €20 million in cost savings" mainly by transferring care away from hospital clinics into the community.
He adds that the generic elements of ParkinsonNet can be applied to other chronic diseases and is confident that other specialist networks for patients with COPD, diabetes and rheumatoid arthritis will soon be developed.