The final session in regard to the convention theme, never the less the important one. Empowerment is a big word, but a term used in many aspects with different meaning.
We have used it in connection with applying for EU project grant to be able to develop the concept behind MyLupus to have the necessary measures validated and employed for the clinical advancement, such a tool is – for patients as well as treating specialists.
The earlier project MyLupus was not possible because among other things we needed to provide the research and validated tools to make it happen. This was the basis for applying the EU Commission funding for the BUTTERFLY project, now currently being processed - not knowing the outcome at present.
In the newly established Treat to Target for lupus - T2T SLE one of the overarching principles states shared decision making for setting treatment goals, where shared decision making is part of the patient empowerment concept.
Session Learning Objective:
• To make the general and popular phrases about Empowerment relevant to lupus
• To present the approach and view of outcome behind the BUTTERFLY project
• To inspire member groups to engage in national health and social care planning and projects.
(Chair: Blanca Rubio)
00:15 Posters Review
00:45 MMo Butterfly - Marta Mosca
00:30 Empower yourself - what can we do to improve
• WHO Patient Empowerment in Europe 2012
• IAPO Patient Empowerment vision for the future – EPF, Uganda, LIVESTRONG
• APPG report on Patient Empowerment 2014
• EPF Overview of Empowerment actions 2014
• BUTTERFLY – EU application for MoBile SolUTions for PaTients’ EmpoweRment in Management oF Systemic Lupus ErYthematosus