Could a general rare disease guideline for health professionals help facilitate innovative strategies for working with patients?
Working from the premise that there are simply too many rare diseases identified to provide tailored guidelines for each and every one, the authors of an intriguing article published in the journal Health Policy put forward the notion that a general rare disease care guideline is needed that emphasises a flexible and innovative approach on the part of healthcare professionals, who frequently provide care and treatment for rare disease patients without a specific protocol for good clinical practice. The authors contend that health professionals (including physicians, therapists, nurses, and others) must apply novel techniques and procedures in order to deliver rare disease healthcare services that are effective. Innovative work behaviour (defined as employee-led initiation and the realisation of new ideas within a work role designed to improve role performance) is needed in the absence of specific treatment options for many rare diseases. Such innovation might involve initiating novel approaches or may build upon and adapt existing processes, services or products.
Furthermore, a general guideline that guides rare disease care and treatment could point healthcare workers toward relevant information, such as the pan-European rare disease and orphan drug informational database Orphanet, which the authors state should be “…integrated in the process of establishing treatment guidelines for rare diseases on obtaining relevant information”. The guideline could provide an overview for adopting flexible work roles, networking within a multidisciplinary team to avoid duplication, and establishing cooperation with specialised health centres and between professionals. Such arrangements could empower nurse and therapist workers occupied with the daily care and treatment processes for rare disease patients. The authors call for strengthened communication, in order to allow all healthcare professionals to “feel responsible for displaying innovative behaviour at each stage to improve patients’ long-term care”. A dedicated rare disease guideline could challenge the uncertainty stemming from an absence of specific disease standardised protocols.
Consult the PubMed abstract