Project AMEQUIS

Background

Due 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 project

The 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.

Methods

To achieve this, the following methods will be used:

• Tailoring and distributing online surveys to four different stakeholder groups
• Interviews and online discussion groups.
• Establishing an ongoing communication system with representatives of these stakeholders, thereby facilitating rapid communication and feedback loops.
• Virtual meetings.
• Part of the AMEQUIS toolbox will be tested among professionals and the general public to confirm its user-friendliness.
• Offering additional graphic and video material for dissemination and reporting.

Expected results

Within 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.

Project partners

This project is a collaboration between Nivel and Avedis Donabedian Foundation (FAD), Barcelona.

Nivel project team

Participating Nivel researchers are:

• Lilian van Tuyl MBA, coordinator research program Organisation and Quality of Care
• Prof. Cordula Wagner PhD, executive director Nivel and Professor of Patient Safety at VU University / Amsterdam University Medical Center
• Valerie Sankatsing MSc, junior researcher Nivel
• Laura Muns MSc, junior researcher Nivel

Funding

This project is subsidized by the European Committee.

Want to know more?

For more information on this project, please feel free to get in touch with the Nivel expert(s) involved. You will find them on the right, together with the (future) Nivel deliverables (publications) and other relevant content.