National Data Standards Patient Engagement Workshop
On the 12 January I attended the National Data Standards Patient Engagement Workshop organised by Marlene Winfield, Director for Patients and Public, who I met on the VSNAG. After her opening presentation we heard from an assortment of people regarding information. How your hospital records are to be made available electronically saving the NHS vast amounts of time and space. Instead gps and hospitals will have instant access to your records anywhere in the world subject to confidentiality issues. This will make things easier for cavernoma patients as their records will be available worldwide. Your co-ordinator was quite vocal in noting that pre-existing conditions complicated travel insurance and the chances of being seen by someone who knows of cavernoma if a bleed was to be experienced on holiday were remote.
Ian Stuart Ph.D.
Cavernoma Alliance UK
www.cavernoma.org.uk