Assessment of the 5-year evaluation for 1st call members of the European Reference Network on Rare Endocrine Conditions (Endo-ERN).

Background: The European Reference Networks on Rare Endocrine Diseases (Endo-ERN) and member healthcare providers (HCPs) both are mandated to undergo periodical evaluation of their performance every 5 years. This evaluation is to ensure the continued high standards of ERN HCPs and gauges network progress. The first 5-year evaluation took place in 2022 for healthcare providers that joined Endo-ERN as full members in 2017. As the first implementation of this methodology, it must be reviewed and refined before the next 5-year evaluation. Aim: To investigate how the evaluation process could have impacted the changes in scores beyond merit of the HCP. Methods: This mixed-methods retrospective study and content analysis (CA) was used to examine the self-evaluation results from HCPs, comparing the draft and final scores earned. Results: Fifty-eight HCPs that were subjected to the 5-year evaluation were included, with 14 receiving on-site audit. Final scores of HCPs who received an on-site audit were significantly higher than draft scores in only one area, concerning 'quality and safety' (W = 105, P < 0.0001). CA found five different concepts potentially causing this difference. HCPs with on-site audit commented 'No evidence is provided' online frequently. In follow-up, 61% of HCPs who received the on-site audit felt the on-site visit added value; however, in parallel, 55% felt that the on-site audit is not necessary. Conclusions: An on-site audit has some added value for evaluation activities; however, it can place unnecessary burden on healthcare professionals in the current structure. This study now provides five key recommendations to improve the next ERN 5-year evaluation.