Sustainable public health systems for rare diseases

Abstract

In the framework of the Joint Action for Rare Diseases (RD-ACTION), a specific task was defined to identify mechanisms influencing sustainability, equity and resilience of health systems for rare diseases (RDs).

Method: literature narrative review on health systems sustainability and resilience for RDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL, EMBASE, STN International and GoogleScholar. Analysis: interpretive synthesis concept and thematic analysis (Dixon-Wood et al.)

Results: 97 papers and 4 grey literature publications were identified. Two main topics stand out: economic evaluation and networks. The first topic did not identify widely accepted criterion to assign more weight to individuals with greater health needs. Healthcare network are identified as increasingly important for sustainability and resilience, in all of their aspects: professional (‘expertise’), ‘experience’ networks of users and carers; policy, learning, and interest networks.

In conclusion, possible mechanisms for ensuring sustainability can be identified in networking, patients’ empowerment and reorienting healthcare towards integrated community and home care.