Delay to Diagnosis – New global Steering Group
New global Steering Group
The launch of our Delay to Diagnosis Global report last summer was a significant milestone for ASIF. The report was well received and we managed to spread the message far and wide; we presented the report at EULAR, at the Indian Rheumatology Conference, recorded a podcast about it and had an article in the Irish Medical Times. But, we need to get the message to policymakers, healthcare leaders and anyone with a role in axSpA diagnosis and treatment.
And so, now we are moving the project onto this crucial next stage. We are delighted to announce that a new global Steering Group has been formed to help us decide the strategic direction of the project and how best to tackle the barriers we identified in the report. The Steering Group is made up of ASIF members and people living with axSpA, world-leading axSpA healthcare professionals and patient advocacy and public affairs experts.
Our first meeting was held on 3 March; it was a lively affair, with lots of discussion and engagement from everyone on the group. We discussed which barriers are most urgent to tackle and where we might have the most impact on the diagnostic delay. Broadly, the group felt that awareness of the disease for those with symptoms, the general population and in primary healthcare, were crucial to reducing the delay. We are now working to develop these ideas further. Look out for our presentation at the ASIF Council Meeting, where there will also be an opportunity for all our members to share their thoughts on how the project can benefit your organisations.