Introduction: To serve clients from an holistic view, connecting specialty care to generic care is necessary but complex. ParkinsonNet is considered a best practice in the Netherlands and internationally when it comes to improve care by means of a disease specific network[i] [ii]. ParkinsonNet is successfully for more than ten years with having multiple scientific articles to prove its effect. Results are better outcomes and cost savings[iii] & [iv]. These cost savings outweigh the cost of building and maintaining the network. Next to ParkinsonNet also other networks like ClaudicatioNet, MSNet, DementiaNet are developed and available on a large scale in the Netherlands. How to connect and integrate these networks further is a future challenge.
Policy context and objective: Although these networks add value, they are not embedded in the regular way of providing care in the Netherlands. That leads to the challenge that they have to struggle to finance their coordination costs where at the same time they can prove they realize significant cost savings in the Netherlands. For its recognition as best practice, in 2017 ParkinsonNet was asked to develop in co-creation with other similar networks and experts an knowledge and implementation package for disease specific care and knowledge networks in the Netherlands.
Targeted population: For our research we contacted 20 different disease specific networks and we interviewed them using a standardized questionnaire that gave us insight into the goals they aim to achieve, the challenges they face and how they are organized. They varied significantly in terms of size, years of existence, coverage and activities. One of the questions we will have to answer is at what level to organize which activities and at which scale.
Highlights: The duration of the project is two years and we are now halfway. Results show that these specific networks in the Netherlands can learn a lot from each other, specifically around 12 topicssuch as funding for network coordination and care coordination, alignment between these networks and GP’s and leadership.
Another finding is that an development package should not focus on specific steps to take in a certain order, as all networks say they are successful when not planning ahead for more than one year and take advantage of unexpected opportunities that come along.
Transferability: The aim of the development package is that it is transferable to all other disease specific networks in the Netherlands. Based upon ParkinsonNet’s international experience in Germany, Unites States of America, Norway and Luxemburg, our assessment is that these insights for a guideline are also valid for other countries
Conclusions: The governance of these networks is key when it comes to success. On the one hand it is a challenge to align all relevant health care providers and organizations around one specific disease. On the other hand, without cooperating with generalist such as GP’s and other disease specific networks, the goal of delivering integrated care will only be more complex with the increase of disease specific networks.