RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.

BACKGROUND: In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. OBJECTIVE: The RarERN Path methodology aims to create a single reference organisational model for patients' care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. METHODS: Starting from existing standard methods for the creation and elaboration of patients' care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients' involvement and narrative medicine and policy-makers. RESULTS: The RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1-mapping of existing patients' care pathways and patients' stories; Phase 2-design of an optimised common patients' care pathway; Phase 3-consensus on an optimised common patients' care pathway; Phase 4-key performance indicators definition; Phase 5-refinement; Phase 6-pilot phase (optional). CONCLUSION: The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

A study of the prevalence of adverse events in primary healthcare in Spain.

BACKGROUND: Healthcare practices involve risks for patients, but there has been little research to date on the occurrence of adverse events (AE) in primary care (PC). The frequency of AE in PC in Spain, the factors that contribute to their occurrence, their severity and their preventability, were analysed. METHODS: Observational cross-sectional study was carried out in 48 PC centres in 16 regions of Spain. PC professionals were asked to assess whether the AE was caused by the healthcare or if it was an expectable consequence of the patient's underlying condition. A total of 452 healthcare professionals who attended 96 047 consultations were involved. RESULTS: A total of 773 AE were identified, so that the point prevalence of AE was 0.8% [95% confidence interval (CI) 0.76-0.85]. A majority of AE (64.3%) were considered preventable and only 5.9% were severe, usually related to medication [odds ratio (OR) = 4.6; 95% CI 2.1-10.3]. The most frequent causal factor of the AE was associated with medication (adverse drug reactions and medication errors), but problems in communication and management were at the root of many of the AE. Nurses reported more preventable AE (OR = 1.9; 95% CI 1.2-2.8). CONCLUSION: In spite of an AE being less damaging in PC, large numbers of patients and professionals suffer their consequences each year. An awareness of the magnitude and impact of AE is the first step on the road to the cultural change necessary for achieving safer healthcare.