The Rare Disease Person’s Card Implementation Strategy In Portugal

Santos, Anabela; Sá, Paulo; Romão, Rui; D’Arrábida, Cristina; Coelho, Anabela; Diniz, J Alexandre; Martins, Henrique

http://hdl.handle.net/10400.26/10118

Use this identifier to reference this record.

Name:	Description:	Size:	Format:
1-s2.0-S1877050915027283-main.pdf		698.87 KB	Adobe PDF	Download

Send Feedback

Authors

Abstract(s)

The Rare Disease Person’s Card (RDPC) aims to identify and display information regarding rare diseases. It was created through a collaborative work between two major Portuguese heath care stakeholders, namely the Portuguese Ministry of Health Shared Services (SPMS) and Directorate General of Health (DGS), following EU resolutions. The card aims to identify the patient and the rare disease, as well as to display a text explaining the special needs in emergency situations. The disease is coded through the ORPHA code system. RDPC was implemented through the Health Data Sharing Platform. There are three distinct circuit phases in RDPC: requisition, activation and release. Patients use the Patient Portal in order to activate the card. Until March 16 2015, there were 828 cards requested regarding 738 different rare diseases. About 51% of requests were still waiting activation by patients. 16% of activated cards were awaiting approval and printing by the coordinator physician. 33% were sent to patient’s address, thereby completing the RDPC circle. The card is increasing awareness and empowerment of rare disease’s patients, pushing forward the project and improving Health care.