AMEQUIS: an Assessment, Monitoring, Evaluation and Quality Improvement System for the European Reference Networks (ERN) , 2020-2022

Duration: Dec 2020 - Dec 2022

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.

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.

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.

- 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.

In leveraging pre-existing knowledge and ensuring that our diagnosis and proposals cover the perspectives and needs of the most relevant stakeholders, including patients and their families, we will enable them to:
1. assess any new ERN or HCP application in a consitant way
2. monitor the activities carried out and the results produced by the approved ERNs and their members
3. evaluate the ERNs and increase their responsibility
4. improve the ERN system based on a system approach for continuous quality improvement (Plan-Do-Check-Act) and ultimately develop an integrated AMEQUIS model

Avedis Donabedian Foundation (FAD), Barcelona, Spain