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.

Results

The assessment process has been updated according to the feedback received from organizations that underwent and/or supported this application procedure in the past. The manuals of the assessment process have been merged into one guiding document. The amount of information in the document was reduced, yet kept clear and to the point. The necessary documents and checklists that are needed for the process have been collected in a document toolbox. For the monitoring process, the used indicators were thoroughly reviewed and checked for relevance and clarity. This resulted in the proposal of some new indicators in the area of patient experience and the removal of some other indicators that were deemed redundant. An evaluation process was designed in alignment with the monitoring process. The aim was to design this process in such a way that it facilitates reflection and the identification for learning opportunities and improvement strategies.

The AMEQUIS model for quality improvement

To integrate these three processes into a continuous system of learning and quality improvement, the AMEQUIS model for quality improvement in ERNs has been developed. The model is designed to strengthen the ambitions of the ERNs and healthcare providers while acknowledging the diversity between them, and support the development of quality improvement initiatives. The model is based on the continuous Plan-Do-Check-Act quality improvement cycle and can be implemented at the individual healthcare provider level, the ERN level and at the ERN system level.

The updated procedures and the developed model for quality improvement provides the independent assessment and evaluation bodies, the European Commission, and the relevant actors (Member States, healthcare providers and ERNs) clear and robust guidelines, criteria and operational tools to ensure a sound and harmonized process. To inform them about the developments and updates, a framework, leaflet and video were created.

The AMEQUIS quality improvement system explained in an animated video

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 PhD, researcher Nivel
• Laura Muns MSc, junior researcher Nivel
• Nienke Zinger MSc, researcher Nivel

Funding

This project is funded by the European Commission, under the 3rd EU Health Programme.

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.