Introduction

The HCP Performance Score was introduced in response to a European Commission grant obligation under Work Package 1 (Coordination), which requires the establishment of an ERN Member (HCP) Performance Indicator System.

The Network Office, the Management Board, and the Coordinator worked extensively to develop a system that is fair, transparent, and relevant to the needs of the network. The aim was to create a practical tool that recognises the wide range of contributions made by member centres.

Implementation was deliberately taken step by step. Rather than presenting partners with a fixed system without preparation, the network chose a careful and consultative approach to ensure that centres clearly understood the purpose, structure, and expectations of the score.

The HCP Performance Score therefore serves both as a response to European Commission requirements and as a tool to strengthen engagement, transparency, and continuous improvement across the network.

Overview

The HCP Performance Score is used to assess how actively each centre contributes to the network across key domains such as clinical collaboration, data contribution, education, and participation in network activities.

A total of 25 points, defined as the minimum criteria, corresponds to 100% performance. Centres may exceed this threshold, reflecting good or excellent engagement.

Performance levels are interpreted as follows:

• Below 25 points: needs improvement
• Between 26 and 40 points: good

• Above 40 points: excellent 

  

CPMS (Clinical Patient Management System)

The CPMS category evaluates participation in case-based discussions within the network.

Points are awarded for uploading new cases as well as for contributing to existing cases. Uploading a case reflects initiative in sharing clinical information, while contributing to a case reflects active engagement in collaborative decision-making.

Registry

The registry category measures contributions to the network’s clinical data collection.

Points are awarded for enrolling patients and for adding follow-up data. Paediatric cases are counted twice to reflect their particular relevance.

Scoring is based on the number of patients entered or updated:

• 1 to 5 patients
• 6 to 20 patients
• More than 20 patients 

Education

The education category reflects contributions to knowledge sharing and training activities within the network.

Points can be obtained through participation in webinars as a speaker, hosting educational activities such as academies, and engaging in clinical exchange programmes either as a host or as a visiting participant.

Guideline Development

This category evaluates involvement in the development of clinical guidelines.

Centres can contribute either in a leadership role or as members of a working group. Leadership roles carry a higher weight, reflecting the responsibility associated with coordinating guideline development.

Position Paper and CDST Development

This category captures scientific and strategic contributions to the network, including the development of position papers and Clinical Decision Support Tools (CDSTs).

Points are assigned for both leadership and membership roles. Leadership reflects coordination and responsibility for the output, while membership reflects active contribution.

This category supports the advancement of clinical knowledge and innovation within the network.

Participation in the Network

This category measures overall engagement in network activities and governance.

It includes participation in management structures such as the Management Board, leadership roles in working groups, representation at annual Members Meetings, and involvement in patient-centred activities.

Additional points are awarded for the timely submission of annual monitoring data and for publications that include ERN affiliation.

Scoring Interpretation

The performance score reflects both the quantity and diversity of a centre’s contributions.

A score of 25 points corresponds to full performance (100%). Higher scores indicate a broader or more intensive level of engagement.

The scoring system is designed not only to measure activity but also to encourage balanced participation across all categories.

Summary

The HCP Performance Score was developed to meet European Commission grant requirements while also providing a fair and transparent framework to assess engagement across the network. It recognises the diverse contributions of member centres in areas such as clinical collaboration, registry participation, education, scientific activities, and governance.

The tool is intended to support transparency and continuous improvement within the network. It provides centres with a structured overview of their contributions and highlights areas where further engagement may be beneficial. At the same time, it encourages collaboration, strengthens data quality, and promotes shared learning across the network.

Overall, the HCP Performance Score is designed not only to measure activity, but also to strengthen participation, visibility, and cooperation across the ERN.

For any questions regarding the scoring system, please contact the Network Office at ERN.RareLiver@uke.de