“The message is loud and clear; maybe I should spend my energy on something else?”
“I do believe, however, that there is a need for a tool to help MSers self-manage their MS. Would you agree of disagree?”
“At the end of the day there is so much information out there that having an evidence-based website that is well designed without clutter would help MSers a lot. Simplicity, would be the aim!”
07 Sep 2012
Our portal will provide more than this; it will be used as a learning tool to teach MSers about MS, a self-management tool, a self-monitoring tool, a diary, a data repository, an environment for e-appointments with your MS team, …
I just think it's too high tech for many MSers. It would be wonderful to get basic stuff sorted out- like being to email your MS nurse, or have hospital appointment letters sent out via email. I received an appointment letter a month after I should've attended (It had been typed 3 months after the doctor involved had dictated it). Maybe this just happens outside London
People hold this type of info intheir heads, as they learn what is available to them, believe. If it is well designed, it could be useful. Personally I don't really want something MS-specific, and incorporate elements of management into my usual electronic tools.