We were allowed a small insight into this world when we began piecing together an asset library for a carers. Not only to secure cherished memories of a family member, but also to track the years long process of the disease, allowing for new insights. For diseases that are very rare and degenerative, gaining real insight into the progress of the illness is difficult. Carers are simply busy with the act of trying to look after their loved ones over the course of years, sometimes decades.
We set up a Digital Asset Management System to manage TB's of video, photos and audio (the disease also leads to blindness), and set up a simple, easy to use tagging and retrieval system. The data is critical, so we also set up 3 redundant systems with minimal carer intervention. Some of these videos will be provided to researchers over time, and others used for training purposes as outside carers become involved. Various Systems and Process changes need to be designed and implemented over time as new requirements need to be managed.