Patient representatives

A co-ordinating patient/service user representative was identified for each condition by the Irish national patient rare disease alliance—‘Rare Diseases Ireland’ (RDI) in liaison with the national patient organisations listed on Orphanet. The patient/service user representative co-ordinators for each condition were sent the relevant care pathway document and asked to invite key patient advocates from their network to attend an online workshop jointly led by RDI and NRDO. Co-created support materials were provided. This included an information leaflet and slide presentation providing an overview of the project, guidance on the contribution requested from patient representatives, and a feedback questionnaire. The main objectives of these workshops were: to create a supportive space for collaboration and sharing of experiential knowledge; to better understand the common needs and interventions which patients with rare diseases prioritise; and to enhance the relevance and utility of the care pathways. Additional patient representative support was provided by RDI and NRDO via email, telephone and follow-up video call.

A range of forums for contributions were utilised due to the diverse operational structures of the patient organisations involved: patient representative co-ordinators out-reach within their networks; establishment of short-term working groups; review by patient organisation boards; direct liaison of patient representatives with clinical leads. Patient representative feedback was reviewed by the relevant clinical lead(s) before integration to ensure safe clinical governance over the content. These care pathways were presented to patient representatives for final review.