During the Hcsmeu weekly debate last friday a very interesting question was asked: In what way do you think social media can expand awareness for rare diseases? I feel that social media will not only raise awareness for rare diseases, I feel in time it will push innovation in ALL diseases towards a cure. Will Scientists share information yes, we already have the likes of GSK and Novartis using open source databases for Malarial trials and compounds. We have the next step with Pfizer using an open source slide share system which will be invaluable for healthcare professionals presenting the latest innovations. This system could be used as a reference tool for upcoming presentations and trials to check what’s been achieved and progress. The system has unfortunately been taken down and I hope we shall see it back up again perhaps using a comment format so researchers can ask and comment about each others work.
The open source databases obviously speak for themselves as companies hit dead ends with diseases and start sharing their findings with competitors as happened in 2009 with Stephen Friend leaving Merck and releasing Sage , a genetic database used in biologics and shared among the scientific and commercial genomics community. This database is designed to check which drugs react well with which genetic make ups. This is not a pharmaceutical company database, rather a neutral database used by physicians when prescribing and pharmaceutical companies to offset against their own databases, after all you can’t really steal a genomic! You can however seriously progress a disease if you get the genomics wrong. This is also a very important step towards using open source sharing to further personalise medicine. And therefore mapping rare disease in the form of genetics.
Obviously the patients themselves also bring awareness through chat rooms and the simple human basic need to talk to someone else with the same orphan disease which can at times number only thousands worldwide. As excellent open source website for rare diseases is the HON dossier this fantastic website lists all orphan diseases, plus all patient/HCP websites, articles, clinical trials, news and definitions in, wait for it, 5 different languages. The site was easy to find and has information on both disease and drugs used in rare diseases around the world.
In summary I don’t think there is any big secret to social media helping to innovate or raise awareness for rare disease or diseases in general, I don’t even think it’s a case of analysing the term social media and attempting to describe which particular facet would best suit this movement. I think it is as simple as following the lead of innovative companies admitting that they have come to a dead-end, (Alzheimer’s would be the next good candidate for this), and SHARING, that is social after all…..