Duration: 2020 - ongoing
An integrated Assessment, Monitoring, Evaluation and Quality Improvement System for the European Reference Networks
BackgroundDue to a scarcity of solid research, evidence and knowledge, complex or rare medical conditions pose a major challenge to the delivery of high-quality medical care. In Europe alone, the lives of about 30 million people are affected daily by 5,000 to 8,000 different rare and complex diseases. Many of them do not have access to diagnosis and quality treatment.
Since 2017, European Reference Networks have assembled expertise and resources to effectively tackle complex or rare diseases. European Reference Networks (ERNs) are virtual networks of healthcare providers from all over Europe and aim to initiate a discussion about complex or rare diseases and conditions that require highly specialized treatments. With that, ERN’s are pooling knowledge and resources to discuss the diagnosis and treatment of a patient. ERN coordinators convene a "virtual" advisory panel of medical specialists from different disciplines. In order to do so, they use a special IT platform and telemedicine.
Health systems in the European Union must provide high-quality, cost-effective care. However, this proves to be particularly difficult when it comes to rare or complex diseases. Given the central role of ERN’s in treating, diagnosing and investigating such complex and rare diseases, the quality of the care they provide is of high importance. Promoting and safeguarding a robust and feasible monitoring system is therefore essential. Over the years, procedures have been developed to assess and monitor the operation of these ERNs. An evaluation of the experience that is already gained with these procedures allows for further improvement.
Purpose of the projectThe AMEQUIS project, carried out in collaboration with the Avedis Donabedian Foundation (FAD), aims to develop an Integrated Assessment, Monitoring, Evaluation and Quality Improvement System (AMEQUIS) for European Reference Networks, by enabling them to learn from experiences and identify potential pitfalls.
MethodsTo achieve this, the following methods will be used:
Expected resultsWithin this project, we aim to leverage pre-existing knowledge and ensure that our diagnosis and proposals cover the perspectives and needs of the most relevant stakeholders, including patients and their families.
The overall objective of this project is to provide the necessary technical assistance for the development of an Integrated Assessment, Monitoring, Evaluation and Quality Improvement System for the ERN network. This integrated approach provides the independent evaluation bodies (IAEB), the Commission and the relevant actors (Member States, healthcare providers and ERNs) with clear and robust guidelines, criteria and operational tools to ensure a sound and harmonized process.
This will enable us to:
Project partnersThis project is a collaboration between Nivel and Avedis Donabedian Foundation (FAD), Barcelona.
Nivel project teamParticipating Nivel researchers are:
FundingThis project is subsidized by the European Committee.
More informationFor more information on this project, please feel free to get in touch with a Nivel contact. On the right you'll find these Nivel contacts, together with the (future) Nivel deliverables (publications) and other relevant content.
For more information about Nivel as a partner in healthcare services research, please feel free to contact our manager International Projects Inge van Houdt PhD.
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