Table 1 RarERN Phases and expected outputs

Phase 1—mapping of existing patients’ care pathways and patients’ stories

To get the picture of the current practice in rCTDs care organizations across the different ERN ReCONNET centres and collect patients’ stories and perspectives on their experience with their care and their disease

(1a) Flowchart that graphically represents the different phases of the care pathway followed in each centre

(1b) Co-design of a survey for the collection of patients’ stories (possibly in different languages)

Phase 2—design of an optimised patients’ care pathway

Optimization of the current care provided to patients in a common patients’ care pathway and elaboration of patients’ stories

(2a) Drafting of the optimised patients’ care pathway Flowchart taking into account the patients’ care pathways followed in the HCPs for diagnosis, treatment and monitoring

(2b) Integration of the list of needs and priorities related to care and care pathway extrapolated from the patients’ stories into the common patients’ care pathway Flowchart

Phase 3—consensus on an optimised patients’ care pathway

To reach a consensus among stakeholders on an optimised reference organisational model on the patients’ care pathway to be followed for the specific disease

Optimised reference organisational model on the patients’ care pathway to be followed for the specific disease

Phase 4—KPI definition

Co-design of Key Performance Indicators (KPI) needed to assess the performance of the organisational procedures, their impact on the disease outcome and the economic and organisational sustainability for the healthcare providers

Detailed list of the Key Performance Indicators (KPI)

Phase 5—refinement

Development of the final version of the optimised common care pathway model, of related KPIs, and of instructions for its application in specific healthcare contexts

Inclusion of additional KPIs in the optimised common reference organisational model on the patients’ care pathway to be followed for the specific disease. Dissemination of the optimised common reference organisational model across the different stakeholders

Phase 6—pilot phase (optional)

To assess the applicability and adaptability of the optimised common patients’ care pathway in specific healthcare providers using related KPIs

Application of the organisational model and collection of the KPIs. Identification of eventual barriers to the application of the organisational flow in specific contexts